Barry McGrath: Welcome to ‘Under the Skin’, a new podcast series sponsored by UCB, which will be delving deep into an under-recognised condition called hidradenitis suppurativa, or HS for short. I'm your host, Barry McGrath, and I've been living with HS for over 3 and a half decades, undiagnosed and misdiagnosed for about half of that time. I'm a former research scientist and I currently work with a healthcare intelligence company in medical writing. Several years ago, with some fellow patients and their families, we established HS Ireland, a patient- and family-led association that aims to increase HS knowledge and awareness, support and treatments for all those living in Ireland with HS. With the help of our expert clinical guests across this podcast series, we will follow the often-complex patient journey from pre-diagnosis through to disease management. Sharing knowledge of treating HS while discussing the many facets and challenges associated with the patient experience. In the first episode of this podcast series today, we start by exploring some of the fundamentals. What is HS? Who gets HS? And how common is it? To help me answer these questions, I'm thrilled to be joined in this first episode by Dr John Ingram. Welcome to the podcast, John. 

John Ingram: Thank you very much, Barry. 

Barry McGrath: Now, while we already know each other, it would be great if you could start by telling our listeners a little bit about yourself and how you came to work in the HS field. 

John Ingram: Yeah. Thanks, Barry. I should explain that I'm a clinical academic. I'm a clinical reader and consultant dermatologist based in Cardiff, in the UK. And when I first started training in dermatology nearly 20 years ago, HS to me, was the area of biggest unmet need in dermatology. We certainly had patients for whom there wasn't enough treatments and even the basic information was lacking. So I run a regular HS clinic, it now dominates my clinical workload. And I also combine that with research into HS. And I feel very fortunate to be able to address those questions that come up in daily practice in every clinic that I do, which really start from patients wanting to know more about HS and then looking to see if through research we can begin to answer some of those really pressing questions. 

Barry McGrath: Thank you very much, John. So without further delay, let's demystify HS, as we'll call it during the podcast series, for our listeners. Let's start with what actually is HS and how does it develop? 

John Ingram: HS is a chronic inflammatory condition  and so that really means that there's an overactive inflammatory process in the skin which makes it become red, painful, and produce really what we might think of as skin boils, in that they become raised red areas that can leak pus and are often very painful indeed. And they are localised to skin creases, so that's the armpits, the groin, around the female chest area, the buttocks and the waistband, for example . And so those are the two elements in terms of what a person experiences and what people can see. And then the third element is this concept of being a chronic disease. So these flares of inflamed lesions come along, and they keep coming intermittently. And as we progress from mild disease, where they come along every so often, we go on to moderate or more severe disease where the inflammation is often present continuously. And so that pain and discharge and so on can occur every day. 

Barry McGrath: So, John, you mentioned that HS typically occurs in the skin folds. Why is that do you think, and what's going on there?

John Ingram: Yeah Barry it's certainly been recognised as a very sort of specific element of HS, affecting those creases. And, and in fact, another name for HS is 'acne inversa' where we are getting these sort of inflamed lesions affecting the skin crease sites. HS is very different to regular acne and so we really now are focused on the name hidradenitis suppurativa, or HS to make it easier to say. But you know there's this concept that probably there's inflammation around hair shafts that appears to be causing the hair shaft structure to swell, the structure then seems to burst and produce inflammation under the skin. And that inflammation may settle by itself, but quite often can produce scarring.  And the particular scarring we see in HS is the formation of skin tunnels under the surface of the skin that run along in sort of lines in those skin crease areas. And those tunnels can form permanent structures that have a tendency to become inflamed. And when they're inflamed, they themselves can produce pus.  And that can sometimes result in daily discharge of the pus from those tunnels. And that contributes quite a bit to the impact of the condition on people living with  it. So we don't yet know what really leads from that inflamed hair structure in the skin to those draining tunnels. But that is an important event in terms of more moderate to severe disease that can increase the issues around drainage due to HS.  

Barry McGrath: I can testify that the tunnel aspect can be quite distressing in that sometimes you apply pressure in one area and millimetres, centimetres, inches even away, you'll have discharge or pus, and it's very difficult to manage that in terms of drainage, in terms of applying wound dressings, etc. One thing I hear quite a lot across skin conditions would be the impact beyond the skin. They say a lot of skin conditions are more than skin deep, to go beyond the surface, etc., etc. Do you see HS having an impact on mental health and overall wellbeing? 

John Ingram: You're right, Barry. You know these effects, some of them are, they may be disease associations. But I think also we cannot ignore, and in fact we should very much prioritise, appreciating the impact of HS on people's lives. You know, I think that we should be mindful that HS affects young adults who are trying to develop careers, relationships and to start a family and so on. And the impact of having a condition which is potentially quite embarrassing, but also living with severe pain which can limit function and reduce confidence.  Those elements, I think, are crucial to appreciate when we're thinking about the impact on people's lives. And I think that those sort of consequences of HS are really important. And so being aware of effects on quality of life and on other symptoms, which I think we would probably prioritise as pain, drainage of the blood-stained pus, any secondary odour from the drainage, and also fatigue from living with a chronic inflammatory condition, which it consumes energy. And so patients often describe brain fog where they can't really concentrate and focus on everyday tasks because the condition is taking away that energy . So I think those impacts are really I think what, you know, makes living with HS such a challenging condition for many people. 

Barry McGrath: Well, thank you for that overview. It's reflected a lot in discussions amongst patients, the mental health aspect, and it's it can often be a difficult component of living with HS. Okay, let's move the discussion on towards demographics of the patients. Are there some common characteristics that you see amongst people who have HS?

John Ingram: Barry we've talked about HS being a condition that typically begins at or soon after puberty, so young adults . And in Europe and North America, it certainly seems to affect women more than men with a ratio of about 3 to 1.  And we don't quite know why that is yet, but it's certainly well-established. That's not the case around the world, so in Asia, for example, men are more affected than women.  And so we haven't teased out the differences there. And in part this is… working out the differences is tricky because we don't yet know the exact cause of HS. There are different contributory factors, one of which is the genetics of HS. So in some Asian families, HS runs very strongly through the family. And there's been a particular gene that has been flagged, but we don't find mutations in that gene in European or North American patients   . And so what we do know is that about 40% or so of people with HS will have a first degree relative, so a parent or a brother or sister, with HS, and so it is clearly passing through families in a genetic manner. Whether there's one gene or multiple genes we don't yet know. It may be that there will be multiple genes implicated here, a bit like some other chronic inflammatory conditions.  

Barry McGrath: Sorry John, do we know - it's a question that comes up amongst patients - is there any way of predicting... People are always asking, 'Can I pass this on to my children?', in situations where HS is running in families? 

John Ingram: That's a really good question, and it's one I'm asked in clinic quite often. And at the moment, we don't have any genetic tools that are able to identify HS genetically. And that means that we can't predict if a person might pass on HS to their children. It is an unanswered question as to, you know, how this is condition is being inherited. I suspect it will be multiple genes and so there won't be a genetic test that we can offer to our patients. And certainly at the moment it's just very much a case of being aware that there's often a family history of HS. And it doesn't appear that HS in a person who has a family history of the condition is different to HS in somebody who's the first person in their family to suffer from HS.     So we don't really get any sort of insights yet into how HS might be managed through its genetics. So it's very much, you can see there, in an infancy, the whole understanding of the genetics of HS. But I think that there are other possible influences. There's the hormonal sort of question around HS affecting women more than men in Europe and North America. And women may experience a flare just before their menstrual period. We sometimes see HS improving during pregnancy, for example, and there is a suggestion that HS severity may reduce at the time of the female menopause.  However, the evidence yet is not robust enough for us to be able to say that with certainty. There is a link between HS and smoking, tobacco smoking, or being overweight.  But there's not that sort of really robust evidence that says that losing weight or stopping smoking will necessarily make a very big difference to HS. But we do know that those factors are involved in terms of the risk of HS beginning . And so, anything that we can do, as clinicians, to help our patients to minimise those risks I think is a useful thing. 

Barry McGrath: Are there other conditions that you see typically linked with HS? Or do patients with HS have other conditions in common? 

John Ingram: Yeah, it's a good point, Barry. And you know, going back to our discussion around hormonal influences, there is a link between HS and polycystic ovary syndrome.  So again, that's sort of a maybe a connection on the hormone side. And HS is linked to other chronic inflammatory conditions. So there's an increased rate of psoriasis, you know, a skin condition that I think is better recognised sometimes than HS. There's a link with inflammatory bowel disease, so Crohn's disease or ulcerative colitis. And some patients may experience inflammatory arthritis so inflamed joints, not so much rheumatoid arthritis, but some of the other inflamed joint problems . And then the sort of metabolic syndrome kind of issues in terms of influences on cardiovascular disease risk. But I think probably the major issues are probably effects on mental health that we've talked about. 

Barry McGrath: Sure. 

John Ingram: Depression and anxiety. The evidence is there, that there's a higher rate of depression and anxiety in our patient group.  

Barry McGrath: Thank you, John. I'd like to speak for a moment about the epidemiology. How common is HS amongst the general population? Do we have any data on that? 

John Ingram: That's a key question, Barry. HS at one point was branded as a rare skin disease, I think we're gradually beginning to appreciate that the reverse is true, that it's actually quite a common disease. So the estimates for prevalence, which means sort of how many people in the population have HS, have varied from, sort of small percentages, very much less than 1% up to about 4%.  And that to us means that there is some major underlying factors for that and when we look at all of the estimates, I think probably in Europe for example, they probably centre around about 1%.  When we look across at other conditions and think about those that have a similar prevalence, we're in the sort of spectrum of things like hyperthyroidism, thyroid disease, coeliac disease, that many people would have heard of, and perhaps psoriatic arthritis, and not so far away from psoriasis itself . So you know really into quite a common condition range. And I think that, that really highlights the under-recognition of HS by I think clinicians but also by the general public. 

Barry McGrath: It's interesting you say that because we deliver awareness talks to many healthcare students around Ireland and we'll often begin our talk by asking them how many of them have heard of psoriasis and how many have heard of HS, and it's invariably 100% and 0%. 

Barry McGrath: Very few people have heard of HS and the whole point behind this podcast series, I think, is to start talking about it and start having an open discussion because for far too long HS has been in the shadows, so to speak. I'd like to go back to the rates and the differences. Do you have any other ideas as to why there's such a huge rate difference, or prevalence difference?

John Ingram: Barry, we certainly see that the method of collecting the data does influence the results . So for example, some of the very low figures might arise from insurance data that's being collected, for example, in North America. And you know, the issue there is that some people need to have insurance to be included in those data collection exercises. And HS, you know, often that will affect people who are uninsured and so they're missed. And so that can produce quite, you know, underestimates potentially. But there's also the issue that when you're collecting electronic data about healthcare, the condition has to be recognised and coded to enter the data. When we did a study looking at UK primary care data and HS prevalence, we found that about a third of the total patient group was undiagnosed. People were presenting to their GPs with multiple skin crease skin boils but they weren't being recognised and diagnosed with HS   . So then they're missed, you know, from that prevalence figure. And I think it comes back to, you know, that lack of disease recognition. The classic example that we quote is a study that compared the time difference between first symptoms and diagnosis for psoriasis versus HS. And, you know, in psoriasis, it was 1 and a half years. In HS, it was more than 7 years.  So it shows that there's a lot of people living with HS without knowing what it is and without receiving the appropriate care. 

Barry McGrath: I guess this is compounded by a number of factors. It can take a patient a long time to go and see their family doctor or their physician and describe HS. I know that was my own personal experience. I was too embarrassed to go. I was a teenage boy. I believe there are some studies to show that it takes the patient about 2 years or so, or 2 and a half years before they actually get to see…     And then the doctor they do go and see may not be familiar with HS, so it can be a long time and can exacerbate this delay. 
I'd like to go back to one thing you mentioned about the difference in collection methods to estimate prevalence. Are you aware of any efforts to try and harmonise efforts to get a good idea of what the true prevalence rates are and to use the same collection methods? Because without this accurate data, we're effectively invisible and we need a robust data to influence the policymakers, the decision makers and the politicians, etc. 

John Ingram: Yeah, it's a good point Barry, the HS clinical and research community is trying to work to this really important aim. There is a study called the GHiSA study  Hworking at the minute to assess members of the public, to ask them if they have any problems with skin boils in skin crease sites, and then to examine people and be able to get that gold standard measurement of the number of people with HS. So, you know, we look forward to the results of this global effort, because while we will no doubt see variation from country to country, I think it will certainly demonstrate that some of the lower population-based estimates have been lower than the reality. And I think this will, of course, help to guide the providers of healthcare, the payers and the national health systems and the medical insurers to really understand the magnitude of the problem and then devote enough resources to it, because we know that our patients are not getting all the input they deserve right now. 

Barry McGrath: One thing I'd like to focus on for a moment is why is there such a diagnostic delay in HS? The figure we often hear is 7 to 10 years on average internationally . Why is that happening? Because it's having obviously very harsh consequences on the person with the condition. It's having consequences on healthcare at large and by extension, it's having consequences on society. 

John Ingram: Barry I completely agree. And this really speaks to the issue that HS is a scarring condition, and we must not miss the boat. We must not have patients reaching effective care too late in the disease process. And we talked about the psychological impacts of living with undiagnosed HS and also then that progressive scarring that can occur that makes treatment more difficult, it means that surgery is almost certainly needed for example when it could be prevented.  And that I think is a message that I would love to be a take home from our podcast today that, you know, colleagues who may not know quite so much about HS, if they can just be mindful of the condition, that is the key thing really, because ultimately, of course HS is a relatively straightforward clinical diagnosis. You're looking for characteristic skin lesions in skin crease sites and then the elements of chronicity    . And those are the elements that define HS. So there is no complicated imaging or sort of sophisticated biomarkers that we need to use to define HS. It's really a clinical diagnosis. And I think that one of the challenges is that to examine those skin crease sites is not straightforward, it requires time, the patient will need to expose those areas. 

Barry McGrath: The intimate parts of the body. 

John Ingram: Yeah, that's right. So, you know, the patient themselves may not have exposed that part of the body to any other adult or certainly a health professional. Do you hear about that, Barry, in your conversations? 

Barry McGrath: You know, all the time, particularly from the younger people in their teens, etc. They've a lot going on in the body as it is, they're very self-conscious and it takes a lot of courage to effectively go to a stranger and show them these bits and pieces. 

John Ingram: Yeah. And so if the clinician is a bit rushed or busy and doesn't give them that space to be able to generate the confidence to then demonstrate those affected areas, I think that's a big part of it. But also I think those initial medical encounters are so crucial in terms of a patient engaging with the health professional. And Barry, I know you've spoken before about, patients can lose faith in their healthcare professional if they don't get a sort of thoughtful response initially. 

Barry McGrath: Yeah, like most things in life, the first experience can have a big influence on whether you go back and sample that again. One thing we suggest to people, particularly the younger ones, is to bring a family member with them to the first consult. And it may feel a bit more comfortable in such a situation. 

John Ingram: Yes, I agree. And from a clinician perspective, it's so helpful to have that support for the patient. It's also, you know, a person who can then also absorb some information as well. 

Barry McGrath: It could be very overwhelming for the person. You've a lot to take in and if you have somebody there who will sit down and calmly take the notes and keep record of all the relevant points that need to be brought home. It can help.

John Ingram: Yeah. Yeah, I agree. And I think also, you know, the recognition part of it. I think that's all about awareness. And I'm very conscious that dermatology has a relatively small part of the curriculum for healthcare professionals. Most doctors, they have one or two weeks of dermatology, and there's a lot to cover. And so we do struggle to ensure that HS is part of that curriculum. So, to me we have acne, psoriasis, eczema and I would say HS is the fourth major inflammatory skin condition. And you know, its prevalence deserves it. And I think, you know, as our understanding of the tools that we have to try and improve HS improves, it needs embedding more in those curricula. I think, you know, it's quite often the case that it will not be a dermatologist who first encounters a patient. And so, you know, I think it's our responsibility to try and disseminate the recognition of HS. 

Barry McGrath: One thing we unfortunately hear quite a bit about is that people who are seeing, say a GP or someone else, that will tell us that their GP is reluctant to refer them to a dermatologist. 

John Ingram: Yeah, absolutely, Barry. You know, it's so frustrating as a dermatologist to see somebody with more advanced HS, which is more challenging to treat, and we know that the patient has had to endure a great deal of difficulty and impact on their life before reaching us. So, you know for me, it's a priority to see somebody with HS because we can make a difference and we can prevent that scarring that would otherwise occur. 

Barry McGrath: And I know from a patient perspective is that when they finally do get to meet the likes of you and many of your wonderful colleagues out there who have a very good understanding of HS, it's such a relief to finally know that there's someone who understands what you're going through. And effectively someone who's got your back and who's willing to work with you to try and make things more manageable. 

John Ingram: We are often very much needing to give our patients time and space to really describe all the frustration of their care to that point, which has often been delayed. And so I think that our first consultation, I'm often just allowing my patients to explain that. 

Barry McGrath: Because it's important to bear in mind that it's, on average, it'll be 7, somewhere between 7 and 10 years, by the time someone gets to sit in front of the likes of you. And they've had a torturous and treacherous journey getting to sit in front of you in your clinic. 

John Ingram: Yeah. Yeah. I think that we should never forget that. So I think there's plenty that our primary care colleagues can do to help HS, for example, managing those disease associations I mentioned around mental health and cardiovascular disease, also providing pain relief, wound dressings, for example. Those are key elements. The GP's are particularly well placed to consider, but then also referring appropriately so that we can work in partnership with our GP colleagues. 

Barry McGrath: Thank you very much for that, John. It's been a fascinating discussion and I'd just like to take this opportunity to thank you and your wonderful colleagues for your interest in HS. Before we go, I do have one last personal question, and it's one I ask every HS clinician that I've had the pleasure of working with. Why did you get interested in HS? I know you've dedicated much of your career to this. 

John Ingram: So, Barry, first of all, pleasure talking with you. And I'm really pleased that I'm able to help with this series of podcast that I think will cast a light where it's particularly needed. And I think that relates to why I got into looking after people with HS and researching HS. Really, it's about the unmet need. When I was training, we could provide perhaps an information leaflet and would try some sort of preventative antibiotics perhaps, but essentially say, 'Well there's not much point in offering a follow-up here because there's not much else that we can do'. And I felt that was really, in the 21st century, it was so disappointing. Thinking about a key take home from our discussion in this podcast, I would say that really disease recognition is the key thing here. Of course, that will be the thing that reduces that really disappointing diagnostic delay that we have in HS. Because the sort of recognition is so straightforward really it's you know, characteristic skin lesions in skin crease sites and then the elements of chronicity.   And that if we can reach out to our colleagues in other parts of medicine and embed that in their thinking, to trigger the recognition and appropriate referral where needed, I think that will really help and of course it will link into patients having the confidence to see their clinician. I think that will work together to really fix this challenge that we currently face. 

Barry McGrath: I couldn't agree more with that. Thank you very much, John, for your time in this podcast. 

John Ingram: Thanks Barry. 

Barry McGrath: In the next episode, we'll take a closer look at those living with HS and how deeply it can impact many different aspects of their lives. I hope you enjoyed this episode and learnt something new about HS in the process. Remember to follow the 'Under the Skin' series on Spotify to be notified about new episodes as they become available. Thank you very much for listening. Until the next episode. 

This podcast has been fully produced and sponsored by UCB and the content does not necessarily reflect the views of UCB. This podcast is not certified for continuing medical education. The information provided is for educational purposes only and is not intended to replace discussions with a healthcare provider. 
 

Dr Barry McGrath: Welcome back to ‘Under the Skin’, a podcast series sponsored by UCB that delves into the chronic inflammatory skin condition known as hidradenitis suppurativa, or HS.1 If you’re just joining us for the first time and the words ‘hidradenitis suppurativa’ mean very little to you, then I recommend you go and listen to our first episode which covers many of the fundamental questions you might have about this condition. I’m delighted today to be joined by Professor Falk Bechara who is going to talk to us today about how HS can impact on a person’s life. Would you care to introduce yourself to the audience please, Falk? 

Prof Falk Bechara Yes, thank you, Barry. So my name is Falk Bechara, I'm working in the Department of Dermatology at the Ruhr University in Bochum in the western part of Germany. And I'm head of the department of Dermatologic Surgery, and I'm also leading the International Centre for Hidradenitis Suppurativa, and I'm doing that now for more than 20 years. And so, I'm happy to share a little bit our experience treating the disease and giving a little bit background maybe on affection of quality of life and how patients really, really suffer from that disease. 

Dr Barry McGrath Thank you very much for that, Falk. It's obvious that you've vast experience in HS and perhaps no better person to talk to about how HS could impact a person's life. I guess in that time you have seen and taken care of quite a few patients. To refresh our memories, in Episode 1, we examined a little about what HS is. But just to remind people, could you give us a very quick overview of what HS is please?  

Prof Falk Bechara I would always say it's one of the big three inflammatory skin diseases. So most people know about psoriasis, most people know about atopic dermatitis, but hidradenitis suppurativa is also part of those big three.2,3 And if you talk about the disease, it is a chronic inflammatory skin disease. It is affecting the hair follicle.1,4 Once our patients have that inflammatory affection of the hair follicle, it does not stop. It is some kind of vicious circle. So, they have follicle that is inflamed, burst. After that, you have an additional strong inflammatory reaction of the skin. And this is like a vicious cycle. It goes on and on and on. And so, we are talking about a very, very chronic, often debilitating disease of the patients, and that is located in the big skin folds of our patients. So mainly the axillary and the genito-anal area.5 And that's a little bit maybe to refresh what we are talking about. 

Dr Barry McGrath Now, we briefly described how it physically impacts a person's life but, beyond the physical, can you explain some of the ways in which HS can impact a person's quality of life. 

Prof Falk Bechara Barry, I think to clearly understand the impact really on the patient's quality of life, we have to maybe step back one step and think about or remember: when do we have the first lesions, typically, in our patients? So, we're talking about a disease with a disease onset mainly after puberty.1,4 So, we're talking about first lesions – patients are 15, 16, 17 years old. And then when they present, often for the first time, they are already 23, 24, 25 and have a history, a year-long history of inflammation at a very early time of their life.6,7 And so, I mean, Barry, when I look back at my age when I was 15, 16. So I think that's a very, very specific period of life, right? This is something where you start to create your personality, you start to get in contact with, oh well with the girls, boys, you start to have... form your social life. Now, think about a disease that affects you at this time point with painful lesions, with lesions in areas like the genital area.5,8,9 Shameful areas. A shameful disease.5,8,10 A disease that is coming with pain. The drainage may be of pus and blood5,8,11,12 – and all those things, in these areas, at that age – I think everybody then can understand more easily how tremendously the quality of life and the whole, let's say the whole... your whole personality is affected by our patients. And if you think about those points, I would say it becomes very obvious and very clear to everybody that we are talking about a disease that has, at least for me, and also if you look at the data, the most or the strongest impact on quality of life in all inflammatory skin diseases that we know.10,13 I mean, you cannot overestimate the impact of that disease on the quality of life of our patients. 

Dr Barry McGrath Thank you very much for highlighting this very important point. As a teenager, as an adolescent, one is conscious and thinking a lot about how you look and so on. And there's a lot of typically, a lot of changes going on in your body. So to have this pain, this leakage from wounds and this restriction on ability to do things on top of all that's going on, it can have a profound impact on a person's life.5,8,10,12,14 As you said, also at this point in life, you're finding your identity, you're thinking about intimate relationships with others. And well, that's difficult enough as it is but when you have these additional painful, leaking lesions in private parts of the body, it's just going to make it all that bit more difficult.8,15 It's just recently that the JEADV journal published a supplement on the impact of chronic diseases on the patient population in Europe, and HS seems to have one of the most profound and devastating impacts on quality of life.16 Have you experienced this in relation to your patients with HS and those that you've seen with other chronic skin disorders? 

Prof Falk Bechara You're absolutely right that if you look at the data of different scores like the DLQI – so a very well-known and established score to measure the quality of life in chronic skin diseases17 – you can see that, if you compare it to atopic dermatitis, if you compare it to psoriasis, for example, it's clear that HS has a higher impact on the quality of life, and that's also seen in daily routine.10,11,13 I mean, when we look in our HS centre it's absolutely clear, and you described it, that the severity of the pain is different, and it has a profound impact. And the problem is even in HS is... I think that's also a major reason why quality of life is so tremendously reduced, is that this disease is waxing and waning. Right? It's flaring up, it's flaring up. You don't know when it flares up. You don't know how long your flare is going to take. You don't know how that painful period, how long it's going to be.13,15 So, so… and this is something if you lose control somehow, it's about losing control of your body.15,18 Right? So, you wake up in the morning and you know something is happening here. And that's what the patient tells you. They wake up in the morning and they tell you there is a boil in my armpit, and I know this is going to go beyond anything that I experienced in the last days, and this is sure to impact. I will not be able to go to school. I will not be able to go to see my friends. I will not be able to go to the theatre in the evening or whatsoever. And this is so strongly affecting that, I think, because you ask me, 'Is it also reflecting the experience?'. It is in daily routine, those patients are really suffering. And I would definitely say they are suffering more compared to the other skin diseases.13,15,18 

Dr Barry McGrath Thank you for your insights there. When you speak about the unpredictability of the pain, that has always been one of the most difficult aspects and it leads into the point you made about loss of control. I always struggled with that. And I know from speaking with many others with HS, it's the fact that you cannot make plans for the weekend, to go out with your friends, because you're going through a flare and you don't know how long it lasts.15 Sometimes flares can go on for hours, other times days, other times weeks, and other times longer. And it's the uncertainty and the losing the ability to plan, to think ahead and those are particularly difficult aspects of it.15 On a personal note, in terms of the pain, it's very difficult when, as an adult, you have to ask a family member, a loved one to help you tie your shoelaces in the morning, to help you get dressed and undressed, or get in and out of the shower or bath.13,15 These are the types of daily activities that people with HS can struggle with, particularly those with more severe forms of the disease and in those in the throes of a flare. 

Prof Falk Bechara Barry, maybe just allow me to give you an example just from this week, because it's exactly what you said. You see a patient coming to your ambulance, young father, 30 years old, and he describes to you exactly what you said. Two young children, not being able to play with them, being afraid that they touch the father because it's too painful. You cannot interact with your children. You have to tell them daily, "I'm sorry. I can't act as a father. I can't play with you. I can't go out with you. We can't go to cinema whatsoever". And this is, you know, like you said, this is bringing data or science to daily life, right? And if you see those patients, how they suffer, I think it underlines perfectly what you said. 

Dr Barry McGrath Indeed it does. And thank you for sharing that. Within our group, we hear similar anecdotes all the time. A lot of our people are parents of young children, and they express more or less identical to what you've just mentioned. They feel somewhat failures as parents. They cannot interact with their younger children as they would like to, and it leads to an awful lot of upset and distress. You've mentioned it earlier and there's perhaps no harm in refreshing our memories again. But what are the main physical symptoms associated with HS. 

Prof Falk Bechara So I would say pain – as we discussed before – is, for me, the number one symptom. Pain is in most cases the reason why patients present for the first time to a physician. It is, in most cases, the reason why they might present to the emergency room during the night. Or why they present during a flare. It's pain5. And the crucial thing is, I would like to mention that maybe, it's not just one type of pain. So, it's not only pain in an inflammatory pain, or a skin pain like we know from other skin diseases, or pain due to severe itching or whatsoever.15 So, you have different, you have the acute pain of a boil or a flare. Then you can have chronic pain, neuropathic pain from scars and fistulas.13,19,20 Also, symptoms that I mean, we didn’t discuss that but you know, HS is such a complicated disease because it shifts over time from inflammatory skin diseases to tissue destruction, and that causes a different type of pain.18 So meaning neuropathic pain within a scar is very different from an acute pain of an abscess. A lot of patients underwent surgery, so they have scars. So this can also be a different type of pain due to previous surgeries. And, and if you talk to pain specialists, they would tell you: quite often the pain in HS patients is very complex because you often find mixed pain types which are very difficult not only to treat, but also to differentiate between the different pain types.19,20 So, I think I would maybe summarise that, for me, pain is really one of the most important points. A second one, or a second point that is very, very often mentioned by the patient is the question of drainage.11,12,14 This is something which is completely different to other skin diseases where in most cases you don't have that symptom. I always say, you know, this is what makes your disease visible to others. It's the drainage. It's the fear that others see spots of blood or pus.5,12,14 If you have young boys or girls, they are afraid that friends may see that within the clothes. So it's not only a symptom that is visible, but it's also something which is causing again, we come back to the question, quality of life, embarrassment, shame, it's all mixed.5,8,9,13 And then this, in my opinion, a third symptom which comes along, is then very often a consequence from the drainage, is odour.11 So you can quite often smell the disease. And I think these three points are, for me, the most prominent and evident things. Maybe allow me to talk about a fourth one, where at least I didn't really look for that until maybe the last one, two years. It's fatigue.10,15 It is something that we are maybe more used to, not too much used to from psoriasis or atopic dermatitis. It's something we're more thinking maybe about oncology or oncologic condition when we talk about fatigue. But it is absolutely striking for me. If you talk to patients and you ask them really about fatigue, "How do you feel?". To see how much this disease seems to take patients’ energy. So I think those four points Barry, for me, I would say are the most important ones that we face daily during the work with our patients.  

Dr Barry McGrath I couldn't agree more. You've made some very important points there. Firstly, the pain, the different types of pain that one can experience.20 The acute pain, the chronic pain. At times it can seem relentless for people, and they never see an end to this.18 There's an additional type of pain which leads to the second point you made about drainage, and that would be the pain associated with changing dressings and particularly the adhesive-based dressings. It's like tearing the skin. And there's a particular psychological impact here because you're doing it yourself. You know the dressing needs to be changed because it's saturated, but you know that there will be a few seconds of intense pain while you change the dressing.21 You mentioned odour, and I'm delighted you mentioned it because it's very distressing for people who experience it. It's important to point out that not everybody with HS experiences this foul smell from their wounds, but for those who do, it is exceptionally distressing.11,13,15 If you think you smell, you're going to isolate yourself from people. You won't go out at the weekend with your family and friends.13 And just tied into that, with regard to the dressings and the staining12,15 on clothing, similarly, you will isolate yourself13,15 if you're afraid that the leakage is going to appear on your clothes, on the furniture you sit on. And as often happens, at the most important things, that meeting at work, that time you have to give a presentation at work where you're visible to all in the room. And it's also very interesting you mentioned the fatigue. Because again, that is something that constantly comes up. People are drained emotionally, physically and every other which way from the impacts of HS on their daily lives.1,10,15 So I'd like to ask you what impacts or what impact do the symptoms of HS have on a person's mental and psychological health? Or is this something you see in the clinic? Is this mentioned a lot? 

Prof Falk Bechara Yeah, thank you Barry. I think you're touching a very important point. So, depression is something which is a huge problem in our patient population.5,6,9,13 It is also5,9 well documented in a lot of studies and trials where you see that... I mean, it depends always a little bit on which study are you looking at, what paper are you citing. But it is definitely something where you would say there is between 5, 10 to 30%, depending on the paper, you can see that patients show depression5. Clearly there have been recent studies showing that it's not only depression, so we have a lot of different, other health problems. So, anxiety, anxiety disorders is quite frequent in our patients.6,9,13,18 And again, you mentioned before Barry, having the symptoms we discussed, having the age of onset... This is doing something to you. This is doing something to your personality. This is doing something to your mental health status.18 And I'm sure that the high number of anxiety disorders, at least in parts, is explained by this fact. But I would say these are the most prominent mental health issues, right? Depression, anxiety disorders. So there's a recent study also talking about schizophrenia, which is more prominent in those patients. And this and there are several more. And even I mean, the most striking one is very often suicidal tendency, performed suicide, suicide attempts.22 And even this, I mean, something as I'm not a psychiatrist, right? But for me as a dermatologist, this is really at the end of the extremes of mental health affection. And this is clearly more frequent in HS patients. And it's also clear that we have more suicide attempts and also more performed suicides in HS.6,23 So it's not only again, why am I mentioning it? Because, for me, it's very important that we have a closer look at our patients. That at least we have 1, 2, 3 words for them when they present for a control, for follow-up, to ask, "How are you feeling today? How are you doing?". Because this is extremely, extremely, extremely important. And I want to emphasise so much on that because we have seen a lot of, lot of young patients with those psychiatric disorders and mental health problems and also suicides honestly. 

Dr Barry McGrath Thank you very much for highlighting this. I think the first Director General of the World Health Organization said at the time of the incorporation of WHO that, "there is no physical health without mental health", and the WHO used that as a slogan for a long time.24 And I think there's a growing body of evidence to show how inextricably linked both physical and mental health are.24 You mentioned anxiety, you mentioned depression. And with the right help and treatment, you can restore some or all of that. But with completed suicide, it's important to point out that that's a one-way ticket. There's absolutely no way coming back from that. As a patient, I think, in the clinic, the most important question I've ever been asked with my dermatologist, with my surgeon, or with whoever is, "How are you doing?". Just a general enquiry into how you're doing overall in your life. It means so much to even be asked that question from time to time. So Falk, in addition I'd like to ask, how do flares affect a person's mental health or how do you see that in the clinic? 

Prof Falk Bechara Barry, I think, flares, they play an important role in regard to affecting mental health or quality of life. Because what is a flare? I mean, you know it, I know, we don't have the perfect definition yet of a flare, for sure. But at least for the patient, it means something is getting worse, whatsoever. Something is getting worse. Whether it's one lesion. Whether it's 20 lesions. But the patient is feeling something is getting worse and something needs to be done, or something is happening under my skin, in my skin or systemically. So, the flare is nearly always again associated with pain. But the most important thing for me in a flare is, it is unpredictable. You don't know when the flare is coming.10,13,15 So, you could go to bed in the evening. You wake up in the morning at seven and you feel today is going to be a bad day because I feel in the morning I'm flaring up and the day is for me, it's already over. So, it means you are no longer in any kind of control of your body, your social life, your daily life, or what you want to do, not your work and nothing. So, for me, that's the major reason why a flare has such a high impact. You feel extremely helpless.10,13,15,18 So it means that the flare and disease controls what you are doing. It is telling you how your day, your week or whatsoever is going to be. And I think this makes clear, if you're no longer in control, of how mental health is just affected by that. It's the feeling of being helpless is really something that is affecting our patients.13,15  

Dr Barry McGrath I'm glad you highlighted that because flares can come on quite suddenly. I've left the house in the morning and by lunchtime I've had something the size of a golf ball under my arm that really restricted what I could do, impacted being able to dress or even raise my arm above shoulder level. And as you stress there, it's that lack of control. It's... you may have had plans to do things with your family, with your friends, but all of a sudden, everything takes a back seat because the pain is dictating to you what you can and can't do. I'd like now to move on to the social effects of HS and how HS impacts a person in that regard. How does a visible skin condition like HS affect the person's social life, and how have you seen that with your patients? 

Prof Falk Bechara Yeah, for me, Barry, I always very simply divide the social effect on two different parts. The one type is, or the one part, is private life. Generally, I call it the private life. And the other one is work, education, school, whatever you want to call them.5,15,18,25 They are definitely connected. But it's these two major parts. So there is a huge impact on the whole private social life13,15, right? So, this starts with, like you said it with, can you discuss the disease with friends or not? Or the families? Some are strong enough to do it and that's our goal to reach that level. But very often, especially in the beginning, if patients do not understand. And so, this directly has an influence on their private life. So it affects friendship, it affects activities, it affects strongly also intimacy. And that's a huge part in the, what I call, the private part of social effects.13,15 But the other one is, it is extremely affecting patients’ life course. Also, for education, for work, what they can achieve or not. If you look at the... We have so many young patients, they get their boils before passing the exam. The same story, patients have to double a year in school, they cannot attend what they want to attend at university. You know, I mean, just think about ourselves. When I had, pass my exam or test or something, if you don't feel well, how much that can affect you. Now think about that you have that without... It's unpredictable, 24 hours, weeks and months per year. And it makes clear how much this is affecting our patients’ education and their career and their work generally. And even though once they achieve to have maybe to achieve this job or that job or HS develops during every job, we know about absenteeism.13,15 We know about work disability in our patients, how much higher that is compared to the general population.9,10 We know from daily routine how many patients have problems within their jobs,13 within their boss not understanding that they have, again, the third time within a month, a day off due to HS. We have patients, Barry, I can tell you, we have patients who need surgery. Really, they are in strong need of a surgery, and they would tell you, "I know that, I understand that. But I can't do it. I lost my job the second time. Now it's my third job. I cannot undergo the surgery. I am going to lose my job". And seeing this makes clear how strong the social effects of HS are. I mean we're talking about patients, but there's also an effect on the economy.10,15 I mean, there has been a recent German study26 evaluating how much...about the cost of the disease, just in regard to absenteeism, in regard to work disability, in regard to less efficacy during work. I think this is something we're just starting to understand, the impact also on a socio-economic level.1,5,9,10,13,15  

Dr Barry McGrath Thank you very much for that fascinating overview. I think a lot of it does stem from something you highlighted there in that people have a... It's not an easy condition to talk about. It's not an easy condition to explain. And many people cope by not talking about it.13,15,18,25 And this leads to a whole host of other problems. With regard to the intimacy issues, and I'm delighted you highlighted this because this is something close to my heart. This comes up for discussion quite a lot. And whilst it's important to point out some people have very supportive partners who will help them and encourage them.15,25 Many people cope by completely cutting themselves off from that aspect of their life. They become celibate. They choose not to be involved with anyone, they often say within the group that, "How can I expect anybody to look at me in that way when I am disgusted with myself?". And it's a very distressing topic that comes up quite frequently.15,18,25 People are very, very distressed by this particular aspect of HS. And thank you for highlighting that. While we will have a closer look at HS management in the final episode of this podcast series, it's important to at least address this and look at current HS management and how it reflects or relates to quality of life. Can you please briefly explain how the severity of HS is measured and highlight the role that quality of life has on its classification? 

Prof Falk Bechara I think we're in a situation generally at the moment where we don't have the perfect, internationally accepted score and measurement system yet. I think everybody has advantages, disadvantages. A very simple one and also that patients are aware quite frequently already of, is the so-called Hurley score. So, meaning this is very simple, you have three different stages: Hurley one, two and three.5,12 Simply spoken, Hurley one means... I mean, historically it is a surgical score. So, the name is coming from a surgeon who wanted to classify his patients who came to his office very simply into, do I need the surgery and what kind of surgery? Simply spoken. So, it was never an intention to classify patients internationally.27 And so, he said Hurley one is, there's just inflammation, but there's no need in doing surgery27 because there is no scars and no fistulas and no tissue destruction. And the Hurley two means, so in one anatomic area there is inflammation, but there's also tissue destruction, scars and tunnels or fistulas, but in between normal skin. And Hurley three means, one anatomic area is completely destructed by fistulas and scars.5,12,13 What we know, however, and we come to the second part now of your question is that it is clearly obvious whatever kind of score you use, that the more severe the disease is, the more pain is present, the more affection of quality of life you have and the higher reduction of quality life is present.13  

Dr Barry McGrath Thank you for that fascinating synopsis. In every discussion about HS, it always comes back to diagnosis and how might a proper and timely diagnosis and management of the condition impact the quality of life. 

Prof Falk Bechara Barry, I think this is a very, very important point because, again, think about what we said. The disease is progressive18. So, we have a disease that is not staying in inflammation over years, it is shifting to scars and tissue destruction.7,18 So, it's a little bit like, think about psoriatic arthritis affecting your joints. Think a little bit of Crohn's disease where you get fistulisation in inflammatory bowel disease.28 And it's a little bit more the philosophy for me, and HS is little bit, has similarities with those diseases. So, meaning, why do I mention that? Meaning that it would be crucial, or it is crucial to have an early diagnosis. Of course, we want to avoid tissue damage. We want to avoid surgery. We want to avoid complex procedures. That would be the ultimate goal, to have the patients early diagnosed, start a medical treatment maybe, and reduce the need for surgery.18 Unfortunately, Barry, we are not there yet, and I don't see a realistic scenario within the next years that we're coming completely into that direction, that everybody is diagnosed early enough. Again, think about what we discussed the whole time. Painful lesions, early onset, and now ten years before you diagnose those patients? Well, that's the answer to your question. I mean, how does that affect patient's quality of life? If they are not adequately diagnosed for ten years and they suffer ten years of flares, pain, discharge, smell, and I mean, it is clear where we are going to end. If you are not diagnosing them early enough, and if you're not treat them early enough, you can predict what is going to happen within the next... It is, we are going to see a progressive, devastating, destructive disease, if not diagnosed early enough and treated early enough18. 

Dr Barry McGrath In 2001, a clinical colleague of yours, Professor Yann Von Der Wert published a paper in which he stated, or he wrote that, to diagnose HS, one has to first and foremost think of it.29 And when I first read that, I thought he was being a bit facetious. But I think it's one of the most profound statements about HS that there is. That people are not going to be able to diagnose it unless they're aware of it. And it ties into why we're having this conversation to try and increase healthcare professionals’ understanding of the condition and the importance of early diagnosis. We've looked at how HS affects a person's quality of life. We looked in particular at the physical effects of HS, how HS can impact mentally and psychologically. We also looked at how HS can have devastating social effects on the person. Before we finish up, there's one last question I'd like to ask you. You mentioned at the very start of this podcast that you've been working in this area for over 20 years. May I ask, why and how you got involved with HS management, care and treatment? 

Prof Falk Bechara This is, I have to think back, Barry! Like what is it? Like 20 years, 22 years now ago when I started here in the university. So honestly, I think that was, the reason is quite simple. When I started here, we had those patients but we didn't have any kind of centre for it. So nobody was really, if we were honest, focusing on them and caring about them. So if we had those patients, there was a complete lack of medical option. Surgery was always or somehow regarded as complicated surgery and we just have the surgery. So if I'm honest, 22 years ago, a lot of those patients were just sent away to a centre somewhere and they were not adequately treated. And when I started as a young physician, I thought, that's not the way you should be. And that was the simple starting point, you know, seeing patients, not being able to help them, not having maybe the attitude of others to focus on that disease. And that was something that I just didn't like. And so that's, very simply spoken, how I started to get into, to be interested in HS. And just say we have to change things. The way it is now is not working in the way I like it. And so we changed it, but it took time, I can tell you. So we didn't start with the huge international HS centre, we started without an HS centre and uh, yeah. That's the simple story, Barry. 

Dr Barry McGrath Well, I wish to personally thank you very much for:  
1. becoming interested; and 2. staying; and for all the contributions you and your colleagues are making to the area. While we've achieved a lot together, there's still a long way to go, as you highlighted throughout. On a personal note, thank you very much for this interest in it. I'd also like to thank you for a fascinating discussion about HS with me today. I thoroughly enjoyed discussing this with you.  Thank you so much Barry, it was a real pleasure. In the next episode we’ll be discussing in more detail the huge delay in diagnosis that many people living with HS unfortunately have to go through, why this is the case, and what could be done about it - so make sure to tune back in for that one. Remember to share ‘Under the Skin’ podcast with anyone you think could benefit from it and select ‘follow’ on Spotify to be notified about new episodes as they become available. Thank you for listening! This podcast has been fully produced and sponsored by UCB and the content does not necessarily reflect the views of UCB. The information provided is for educational purposes only and is not intended to replace discussions with a healthcare provider. This podcast is not certified for continuing medical education. 

References  

1. Alikhan A, et al. North American clinical management guidelines for hidradenitis suppurativa: A publication from the United States and Canadian Hidradenitis Suppurativa Foundations: Part I: Diagnosis, evaluation, and the use of complementary and procedural management. J Am Acad Dermatol. 2019;81(1):76–90.  

2. Saunte DM, et al. Diagnostic delay in hidradenitis suppurativa is a global problem. Br J Dermatol. 2015;173(6):1546–9.   

3. Zouboulis CC et al. European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa. J Eur Acad Dermatol Venereol. 2015;29(4):619–44.   

4. Vinkel C, et al. Hidradenitis Suppurativa: Causes, Features, and Current Treatments. J Clin Aesthet Dermatol. 2018;11(10):17–23. 

5. Goldburg SR, et al. Hidradenitis suppurativa: Epidemiology, clinical presentation, and pathogenesis. J Am Acad Dermatol. 2020;82(5):1045–58.  

6. Ingram JR. The epidemiology of hidradenitis suppurativa. Br J Dermatol. 2020;183(6):990–8. 

7. Willems D, et al. Identifying Unmet Care Needs and Important Treatment Attributes in the Management of Hidradenitis Suppurativa: A Qualitative Interview Study. Patient. 2022;15(2):207–18.  

8. Krajewski PK, et al. Quality-of-Life Impairment among Patients with Hidradenitis Suppurativa: A Cross-Sectional Study of 1795 Patients. Life (Basel). 2021;11(1):34. 

9. Posso-De Los Rios CJ, et al. Proceeding report of the Third Symposium on Hidradenitis Suppurativa Advances (SHSA) 2018. Exp Dermatol. 2019;28(7):769–75.  

10. Garg A, et al. Evaluating patients’ unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project. J Am Acad Dermatol. 2020;82(2):366–76. 

11. McKenzie SA, et al. Physical symptoms and psychosocial problems associated with hidradenitis suppurativa: correlation with Hurley stage. Dermatol Online J. 2020;26(9):13030/qt4rm8w7kn.  

12. Ingram JR. Hidradenitis suppurativa: an update. Clin Med (Lond). 2016;16(1):70–3.  

13. Kouris A, et al. Quality of Life and Psychosocial Implications in Patients with Hidradenitis Suppurativa. Dermatology. 2016;232(6):687–91. 

14. Cucu CI, et al. Hidradenitis suppurativa in postmenopause. Acta Endocrinol (Buchar). 2021;17(2):274–7.  

15. Esmann S, et al. Psychosocial Impact of Hidradenitis Suppurativa: A Qualitative Study. Acta Derm Venereol. 2011;91(3):328–32. 

16. Gisondi P, et al. Quality of life and stigmatization in people with skin diseases in Europe: A large survey from the 'burden of skin diseases' EADV project. J Eur Acad Dermatol Venereol. 2023;37 (Suppl 7):6–14.  

17. Finlay AY, et al. Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19(3):210-16. 

18. Howells L, et al. Thematic synthesis of the experiences of people with hidradenitis suppurativa: a systematic review. Br J Dermatol. 2021;185(5):921–34.  

19. Garcovich S, et al. Prevalence of Neuropathic Pain and Related Characteristics in Hidradenitis Suppurativa: A Cross-Sectional Study. J Clin Med. 2020;9(12):4046 

20. Horvath B, et al. Pain management in patients with hidradenitis suppurativa. J Am Acad Dermatol. 2015;73(5 Suppl 1):S47–51.  

21. Moloney S, et al. The Personal Impact of Daily Wound Care for Hidradenitis Suppurativa. Dermatology. 2022;238(4):762–71. 

22. Phan K, et al. Hidradenitis suppurativa and psychiatric comorbidities, suicides and substance abuse: systematic review and meta-analysis. Ann Transl Med. 2020;8(13):821.  

23. Diaz MJ, et al. Hidradenitis Suppurativa: Molecular Etiology, Pathophysiology, and Management—A Systematic Review. Curr Issues Mol Biol. 2023;45(5):4400–15. 

24. Kolappa K, et al. No physical health without mental health: lessons unlearned? Bull World Health Organ. 2013;91(1):3–3A.  

25. Cuenca-Barrales C, et al. Sexuality in Patients with Hidradenitis Suppurativa: Beliefs, Behaviors and Needs. Int J Environ Res Public Health. 2020;17(23):8808. 

26. Kirsten N, Zander N, Augustin M. Prevalence and cutaneous comorbidities of hidradenitis suppurativa in the German working population. Arch Dermatol Res. 2021;313(2):95–9.   

27. Moussa A, et al. Hidradenitis suppurativa: an up-to-date review of clinical features, pathogenesis and therapeutic approaches. 2022;30(1):40–9. 

28. Scharl M, et al. Pathophysiology of fistula formation in Crohn's disease. World J Gastrointest Pathophysiol. 2014;5(3):205–12.  

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Barry McGrath Hello, and welcome to episode three of ‘Under the Skin’, a podcast series which explores hidradenitis suppurativa, or HS for short. And previously, in episode one, we looked at the bigger picture of hidradenitis suppurativa. We looked at the pathobiology, the global epidemiology, with Dr John Ingram from Cardiff in the UK. In episode two, we looked at the disease burden and how it affects the quality of life of patients who have HS, and Professor Falk Bechara of Ruhr University, Bochum joined us to explore that. Today's episode, we're going to look into further detail at the well-established diagnostic delay in HS. It can take an average of 7 to 10 years to diagnose someone with HS.1,2 I'm delighted to be joined by Dr Philippe Guillem to discuss the consequences of the diagnostic delay, and how we might go about addressing this diagnostic delay. Philippe, thank you for joining us. Would you care to give a brief introduction to our listeners?  

Philippe Guillem Thank you. Barry. It's really a real pleasure to be with you, for this podcast. I'm a French surgeon in Lyon, in France. So I, I've been worked with HS patients, for about 18 years now. I'm specialised in HS surgery, but as I don't have any derm in my clinic, I used to also manage patients with HS from a medical point of view. So thank you very much for this collaboration. I'm very happy to be with you.  

Barry McGrath Thank you very much, Philippe, for joining us. I'm especially delighted to have you discussed what, what I think is one of the most important and significant topics in HS. It's one that can have devastating consequences, not only on the person affected by HS, but also on you and your colleagues in healthcare and by extension, wider society. I know it's something that's close to your heart, and I'm looking forward to this discussion very much. I'd like to begin by talking a little bit about what are the early signs and symptoms of HS to try and get an understanding, perhaps, of how and why this diagnostic delay happens. So, could you tell us what are the early symptoms of HS?  

Philippe Guillem It's important first to say that, the diagnosis of HS cannot be made as the first symptom of HS. Notably, because of the diagnostic criteria, we will see further that, usually the disease began begins with, a boil or an abscess, a nodule, that is located under the skin.3 It's not on the skin, but under the skin. And it occurs in specific areas of the body, the main locations are the armpit and the groins.3 So in the first time this is a boil, a nodule here. And what will be drove attention to HS is the recurrence of boils at the same place or at other places.4 So, just think about the very non-specific first manifestation, the primary lesion of HS, and what must make the patient as well as the practitioner to say, oh, it's something different than usual, it's recurrency of the lesions.4  

Barry McGrath Okay. Leading on from that. When do people typically end up seeing the likes of you or one of your colleagues in healthcare? How long between this happening and a person turning up in the clinic looking for help?  

Philippe Guillem Possibly they don't go as the first time to the, to a practitioner of the emergency unit. It depends on the importance of pain. For example, if you have a really, painful nodule under the skin somewhere will prevent you to, to, to, to, to sit down, to prevent you to walk and something like that. I think you will be prone to go to the emergency unit as soon as the pain become unbearable. But sometimes it gets better spontaneously, and you only go to a practitioner because of a recurrency. So it depends really from the patient. But usually, patients, visits a doctor. Eventually, very soon after the beginning of a symptoms. And, the main difficulty is having a correct diagnosis of HS, not having a delay in consulting the first practitioner. And in fact, it really depends on how the first practitioner to be seen will answer the question.5  

Barry McGrath Sure. Like a lot of things in life, the first experience will dictate the course of action. Now, you did mention or your own that the typical locations of where HS effects the armpits, the groin, might that do you think have an impact on how long before someone goes to see a physician? Because, we know that HS just usually starts after puberty.6 Teenagers, adolescence, young adults. Now, if they're having flares in the private parts of their body, they may be a little reluctant to go and show the most intimate parts of their body to, to a stranger.5,7  

Philippe Guillem Sure. You're right, groins and armpits are the two most frequent locations of HS, but there are other locations in other folds of the body, from the neck, back of the neck, the armpits and, and between the breasts.3 And sure, there is, a possibility that some of the locations as the genital area, the anal area, make the patient reluctant to, to show to, to make these lesions visible to the practitioner.7 And sometimes even if they go to the general practitioner for something else, they will not talk about this, specific areas with specific difficulty they encounters in this area because of shame and something like that.8 And yet again, it depends on the first contact with the practitioner.  

Barry McGrath It's interesting you mentioned shame because in speaking with other people who have HS, particularly those who develop this at an early age, two words that come up a quite a lot are “shame” and “embarrassment”.9,10 And just recently we had in our patient group a woman who was who is the mother who has had HS for 20 years, recently started developing problems around her anus. Now, despite having HS for 20 years, despite giving birth, she was very embarrassed, and she approached the group. She said she was too embarrassed to go to her doctor and I thought back to myself many years ago, hiding and ashamed and embarrassed about this. And ultimately, there's nothing for these people to be ashamed and embarrassed about. They need to get help and get to see the likes of you as soon as possible. It’s important that people realise that, there’s nothing to be ashamed and embarrassed about.11 

Philippe Guillem So sometimes, even if the HCP is empathic, there are some words to not be used. For example, I remember a patient who goes to the emergency unit and the nurses just had a look to the, an abscess in the groin. And the nurse was shocked about the huge extent of the abscess and, and said to the patient, how do you manage to live with this? This is something very pernicious because the nurses was really thinking about the patients, but the patient felt that the nurse was horrified by this. So we always have, as an HCP, to be aware of our language, but also our body language. And we always have to be to have a natural behaviour. And sometimes, this first reaction really impacts the all the patient's life.11  

Barry McGrath Okay, now, once they do, get to the clinic. And seek the help. I mean, it's well established that HS, yes, there's this diagnostic delay. Is it often confused with other conditions? Is it being mistaken for other conditions or what do we know about that?  

Philippe Guillem Yes, sure, but in fact, I come back to the notion of recurrency. But if there is recurrent boils, as a HCP, as a doctor, you have to think again about your diagnosis.4,6 You can't have, an, a hair under the skin at each part of the body. In my experience, when a hair is located under the skin and induce inflammation, okay, it occurs once during the life, but not every week, every month, every year. It doesn't make sense. So it's really important to, here we are talking about, HCP awareness about HS. So again, don't be ashamed about the disease and don't be shy to ask for help. And you're right. The role of the patient's organisation, and more generally for social health is really crucial for that.9  

Barry McGrath Okay. So, Philippe, we've established that there is a diagnostic delay. We've looked at some of the reasons why. I'd like to begin our… I'd like to just explore a little further the consequences of this diagnostic delay on the person, on healthcare, but also on wider society. What can you tell us about what's known about each of those?  

Philippe Guillem I think the most important for the patient, is when you don't have a diagnosis of HS.12 The first consequence is that the patient feels guilty about what it occurs. And this is very important because if he or she or she feels guilty about that, she or he will not go further to any HCP. Even if somebody says to you it is your fault because you are smoking, because you are, obese, because, you don't wash yourself as required, you will not go back to the HCP.5,9 So, it is really a vicious circle about that, if you don't have a diagnostic, you will [be] more delayed to have eventually a diagnosis. If you don't have, a diagnosis, you will not have correct treatments.9 If, an emergency practitioner, a surgeon, think that you only have an abscess, he will incise the abscess to relieve pain. He will not take into account the huge amount of pain specifically related to HS, so he will not prescribe painkillers and so on. So you, you will not have correct management of pain. So, surgical management of HS can be inappropriate if you don't have a correct diagnosis of HS.  

Barry McGrath It makes your job more difficult.  

Philippe Guillem Yes.  

Barry McGrath Yeah. Okay.  

Philippe Guillem And the third consequence of delay diagnosis is possibly the fact that without diagnosis, the disease progresses.10 Okay. We have the intuition that it's, a good way of thinking, but we don't really have clues because we don't know the natural history of HS very well. If you wait for years before adding a diagnosis, a small lesion will become a large lesion. I think it's a correct way of thinking.10 Of course… 

Barry McGrath Of course, yes.  

Philippe Guillem It’s not only the extent of the disease at the surface of the skin, it’s also the development of the lesion itself. We, we talked about the boil, and the boil can open spontaneously of because of an incision range or because the patients managed to have it. But the boil can also open deeper under the skin and then the disease, the disease can progress under the skin and results in the development of what it’s called tunnels or fistulas under the skin.10,13  

Barry McGrath That makes sense.  

Philippe Guillem Of course, it's more simple to treat a small lesion than a large lesion for surgery also. So, this is important to have in mind that if you have a delayed diagnosis, possibly you, you miss the window of opportunity and you will have to face more complex disease or lesions with, irremediable, change in the skin.10,14  

Barry McGrath We've established that there is a diagnostic delay. Do we have any idea of how long it typically takes for a person to receive the diagnosis?  

Philippe Guillem Yes there are, there are many studies about that. There are a local studies, national studies, and international studies. In fact, the usual diagnostic delay is about 7 to 8 years. It can go up to 10 years.6,10 Some patients, have a disease decades after the first onset of the disease. Sure, sure.  

Barry McGrath There are two things that are worth highlighting there. Firstly, is the diagnostic delay and the data that you mentioned, the 7-to-10-year average diagnostic delay,10 that's assume someone gets … receives that diagnosis. I'm wondering about the people who never actually get diagnosed. You know, there's probably a vast amount of information out there about people who never got diagnosed during their lifetimes. People are coming to us saying like, we think we have this. Who do we go and see? What do we do? Can you provide us with information? And with the hope is that the social media and digital revolution that's taking place is going to help improve that diagnosis. But again, it'll be a long time before we see… are able to measure, if we ever can.  

Philippe Guillem Yes. You're right. I as I said, I'm managing I managing people with HS for 18 years now. And I saw the revolution you are talking about. And for me, if revolution is related to two points. First of all is social media.5 It's really a revolution because it makes the patients talk together.5,9,15 It makes links between patients. And that's why patients’ organisation’s emerged from that. Because of many patients who are talking about HS in social media.5,9,15 And there is very important, for example, for teenagers who are really connected to social media. This is really important. I see in my personal experience a difference between before and after the social media and the, the really, really, at the beginning of my experience, patients come from the local, patient organisation. [They] come from some GP's and some derms from just around my clinic. And now they're coming from different parts of France and of course they only know that I am HS specialist because of social media. So, it's really something, clearly obvious, in my experience. And the second revolution is the occurrence of biologics in HS treatment.5 And what is what's what I mean with that is that the appearance of biologics in HS treatments make their derms think again about HS. Because if you are an HCP, a surgeon, a GP or a derm with … facing a patient with HS. And you think as HCP that you don't have any possibility to really improve the patient condition. You don't want to see a HS patient in your waiting room..  

Barry McGrath Sure 

Philippe Guillem When you, when the, the biologics appeared then the derms realise that, “okay, perhaps I have something to propose different to the patients”.5 And that's why you can see the number of papers about HS in the medical literature; it's an exponential growing.5 

Barry McGrath Yeah. I think some 45% of all papers on HS have been published since 2021. That's how much it's exploded in recent years.5  

Philippe Guillem So, so I don't understand why in the general population, people are aware about Crohn's disease and not aware about HS. Both of them … both of the diseases are something related to taboo and shame and so on.  

Barry McGrath And there are a grow … there are a number of comorbidities associated with HS, aren’t there. And that list is it appears to be growing all the time. And many of the guidelines recommend screening for other conditions also.13  

Philippe Guillem Yes. You're right. There are different types of comorbidities. There are inflammatory comorbidities such as Crohn's disease, such as psoriasis such as inflammatory joint diseases, so inflammatory comorbidities.4 There are also follicular comorbidities (follicular refers to the hair follicle) and there are diseases associated with HS and related to, to the hair, such as pilonidal cyst disease9 and acne conglobata6, which is a specific form of acne, and something like that.4 There are also, metabolic comorbidities such as diabetes, such as, hypertension, such as, metabolic syndrome, for example, and so on.13 And the consequences of a metabolic disease such as major cardiovascular event, such as heart failure and so on.6 So [it’s] really important to, to have diagnosis; maybe one of the consequences of not having a diagnosis is the lack of screening for potentially severe comorbidities too.10  

Barry McGrath Again, there’s an increasing body of evidence to suggest a delay in diagnosis, but a time to person gets their HS diagnosis, they'll typically have a longer list of comorbidities,10 many of which you've just outlined. … that's a very important point. And it's suggested that perhaps a more holistic approach rather than just the clinical scores; sure you need those clinical scores to do your job etc, but it’s important to also ask the person – to get their interpretation; ask them how they’re doing with this, and so on.9 And it also highlights that the need for multidisciplinary care because, I assume that if someone is struggling psychologically, you will refer them to psychological support, and it's important that someone who needs such support gets access to them,9  So, are the recommended multidisciplinary care pathways – what is the situation there?  

Philippe Guillem Due to its nature … HS is a medically and surgically treated disease.13 So, first of all, you have to be managed by at least a derm and a surgeon. Of course, it depends on the severity of the disease, but you have to think about that. But this couple of HCP is not enough, is not sufficient. Because of the comorbidities, we need a gastroenterologist, we need a rheumatologist, and we need a diabetologist and so on and so on.16 We [can] have somebody who can, who is specialised in addiction for smoking and so on and so on. And you have to have somebody who is aware about diet, who is aware about psychological condition, who is aware about, sexual health.16 About, everything. Social help, for example, for patients who, lost their work because of HS and so on and so on.12 So, intrinsically, HS should be managed by your multidisciplinary team, of course. It's not only to be “okay, I know a gastroenterologist I can refer a patient to” … it's also I have to discuss with the gastroenterologist about the holistic, patient. That is very important.16  

Philippe Guillem So you have to think about that. It's really … you have to be determined in thinking about how you manage, how you organise the care of HS patient.  

Barry McGrath You encourage people to think outside the box, just think a little differently and push boundaries and do things a little differently.  

Philippe Guillem And in my own personal experience, I developed this holistic management because of the very close collaboration with patients, with a patient association, with a local patient association. I had this this wonderful opportunity to do that. And that's why I became an HS specialist, because I was in close collaboration with a patient's organisation.  

Barry McGrath We've teased out a lot about the barriers to diagnosis and so on. Just for some healthcare providers who may be listening … one thing I've always been curious about is, are there any direct or simple laboratory tests that can be conducted to help facilitate a diagnosis?  

Philippe Guillem Thank you to, to ask this because we, we have talked about the patient shame and so on. So, patients were relative barriers for HS diagnosis. But one of the main barrier is the role of the HCPs of course, your right.6,17 So first of all, we have to increase the awareness of the disease between the, for the HCPs is really, really important.6 And we can develop this. But you're right one of the difficulty, but in fact it's not, as difficult as you can imagine because, okay, we don't have any tests.6 You don't have to, any blood sampling and something like that can help you in making your diagnosis. Of course, it could be helping to have something like that.13 But in fact, one of the most intriguing fact in HS is that the diagnosis can only be clinic. You only have clinical criteria.6 For example, for … to make a diagnosis of colon cancer, I need, gastroenterologists, I need anaesthesiologist, I need a colonoscopy, and so on and so on. You have many steps … but in fact no you only have to learn what HS is, what other pre-diagnosis criteria of HS to make a diagnosis. That’s wonderful.  

Barry McGrath I think with the massive explosion in research, the number of treatment options, that there are reasons that we can now start talking about HS publicly and in a positive light. 

Barry McGrath: Well, one positive development in that regard was that in early 2023, the European Commission published a scoping review in which they identified, I think was the top 10 or 12 high burden, under-researched conditions affecting the population of Europe. And they identified HS as one of these conditions.19 Now that's at the European level, and we hope that this will start filtering down to France, to Sweden, to all the European countries and elsewhere. But it's a positive development in that now, it has been published. You and I have known this for a long time, of the impact of HS. But now, the authorities have published this. It's in black and white. It's in print. HS is a condition that deserves and needs attention. Like you said, we can make a huge impact, by earlier diagnosis. Like most things in life, if you act on it early, you can stop the spread and stop the the knock-on consequences that we've outlined.10  

Philippe Guillem When you are a GP and you are, you feel isolated with a patient with a recurring abscess and you don't know how to manage it. You have to take your phone to open your computer and search for a solution. You can't say only to a patient: “I don't know what to do with you”. It cannot be heard by your patient. It cannot be heard by the society that somebody with an HCP said, “I can't do anything.” You can say, “I don't know what you have”; you can say, “I don't know how to manage you, but we will search together”.18 “We will search together to find a solution for you.”18 So as an HS patient, you have to find the strength – and it's sometimes difficult – you have to find the strength to say my situation is not normal. It's not a normal one.8 I have to find somebody who can help me. So the first person who said “I don’t know” or said something “Oh, you have to wash better”, it’s not the correct one and you have to choose for somebody else. So don't be shy.8 Don't be isolated. Don't be alone as a patient, but also as a doctor. 

Barry McGrath So, thank you very much, Philippe, for discussing barriers to diagnosis, the consequences of diagnosis and how to go about achieving an earlier diagnosis. In this episode we briefly went through the main signs and symptoms of HS. The time to diagnosis, the barriers to diagnosis, the consequences of a delayed diagnosis and how to go about achieving an earlier diagnosis. Thank you very much, Philippe, for a fascinating discussion and for sharing your insights.  

Philippe Guillem Thank you, Barry, for your work too, because you are very important for every patient, but also for many, many, many HCPs, around the world.  

Barry McGrath Thank you very much, Philippe, for those kind words. Thank you to our listeners for tuning into this episode. We trust you enjoyed it. Do make sure that you sign up for notifications and stay tuned for future episodes. In episode four, the next episode, we will examine and discuss further how patients’ expectations of HS are changing and how they're changing over time. Do stay tuned and we hope that you’ll tune in for these.  

Remember to share ‘Under the Skin’ podcast with anyone you think could benefit from it and select ‘follow’ on Spotify to be notified about new episodes as they become available. Thank you for listening! This podcast has been fully produced and sponsored by UCB and the content does not necessarily reflect the views of UCB. The information provided is for educational purposes only and is not intended to replace discussions with a healthcare provider. This podcast is not certified for continuing medical education.  

References  
 

1. Barmatz S, et al. Dermatology. 2022;238:772–84.  

2. Nguyen TV, et al. J Eur Acad Dermatol Venereol. 2021;35:50–61. 

3. Goldburg SR, et al. J Am Acad Dermatol. 2020;82:1045–58.  

4. Zouboulis CC, et al. J Eur Acad Dermatol Venereol. 2015;29:619–44.  

5. Snyder CL, et al. Clin Cosmet Investig Dermatol. 2023;16:1833–41.  

6. Vinkel C, et al. J Clin Aesthet Dermatol. 2018;11:17–23. 

7. Revankar R, et al. Int J Womens Dermatol. 2021;7:661–63.   

8. HS foundation.org. Talking about HS. https://www.hs-foundation.org/talking-about-hs. Accessed April 2024. 

9. Howells L, et al. Br J Dermatol. 2021;185:921–34.   

10. Ingram JR, et al. J Eur Acad Dermatol Venereol. 2022;36:1597–605. 

11. Fragoso NM, et al. Skin Health Dis. 2024;4:e322.  

12. Esmann S, Jemec GB. Acta Derm Venereol. 2011;91:328–32.  

13. Alikhan A, et al. J Am Acad Dermatol. 2019;81:76–90.  

14. Sayed CJ, et al. Obstet Gynecol. 2021;137:731–46.  

15. Kirby JS, et al. Br J Dermatol. 2023;189:228–30.  

16. Chiricozzi A, et al. J Eur Acad Dermatol Venereol. 2019;33:15–20.  

17. Willems D, et al. Patient. 2022;15:207–18.  

18. Touhouche AT, et al. Int J Womens Dermatol. 2020;6:164–68. 

19. European Commission, Directorate-General for Research and Innovation. Scoping study on evidence to tackle high-burden under-researched medical conditions. Discussion paper. https://eadv.org/wp-content/uploads/2023/04/Scoping-study-on-evidence-to-tackle-high-burden-under-researched-KI0322261ENN-5.pdf. Accessed April 2024.   

Section 1: Introduction

Barry McGrath: Welcome to Episode 4 of Under the Skin, a podcast series that explores the poorly understood and little-known condition known as hidradenitis suppurativa, or HS for short. In previous episodes featuring specialist HS dermatologists and surgeons, we looked at what HS is and the bigger picture on it. We also looked at how HS impacts on people with the condition. Furthermore, we looked at, the well described diagnostic delay. Widely reported as about 7 to 10 years for people with HS before they learn to have the condition, how this impacts upon them, and not only upon the people with the condition, but also on health care and in turn in wider society.^1,2 In this episode, I'm delighted to be joined by our guest, Dr Fiona Collier, a former general practitioner who practised in Scotland, and Laurelle-Maria Sterling, a patient with HS who is very active with various HS support networks. In this episode, we will consider how perceptions and views of HS differ across the public, amongst patients and also amongst health care. For the benefit of our listeners. Would you care to give a brief introduction to yourselves, please? Fiona, we'll begin with you. 

Fiona Collier: Hey. So, I've been in general practice in central Scotland for over 30 years, and alongside of that, I also worked part time in the local dermatology department, as a GP with a special interest in dermatology. For about the last 10 to 15 years, I've become interested in HS, initially, partly because it was all the textbooks described as this really rare, obscure condition. But I realised that actually quite a lot of the patients in my practice had this. So, since then I've been involved in education and research. 

Laurelle Sterling: Hi. My name is Laurelle, and I am a social media advocate for people living with HS, specifically in the UK, and, recently been joining in with support groups online and learning and listening as much as I can to other patients living with the condition, just to make sure that I am actually standing as an ally in support of what we need and what we need others to know. 

Barry McGrath: Thank you very much for that introduction, Laurelle. You're very welcome here. 

References 

1. Barmatz S, et al. Dermatology. 2022;238:772–84. 
2. Nguyen TV, et al. J Eur Acad Dermatol Venereol. 2021;35:50–61. 

Section 2: What the general public knows about HS 

Barry McGrath: I'd like to begin by exploring what the public knows about HS. So perhaps we'll discuss that for a few minutes. Fiona, what perceptions of HS, if any, have you experienced amongst the general public in your day-to-day practice and in general? 

Fiona Collier: So, I'd say most people haven't heard of HS unless they've got a family member or a partner who's got HS.¹ And when you tell people about HS, they're almost like incredulous. You know that something that is not that rare and so devastating can be so unknown. You know, sometimes I feel like I'm making it up. 

Barry McGrath: That's been my experience. We've been talking about HS publicly, particularly with healthcare students, and we often ask them at the beginning, how many have heard of HS and often compared to psoriasis, eczema, some of the better-known conditions. And it's generally no one has heard about HS¹, and everyone's heard about psoriasis or eczema. 

Laurelle Sterling: The perceptions that I've come across quite frequently is that it's always linked to either maybe too much sweat or not enough exercise or, I'm eating the wrong things, which to some extent can be true if you're aware of what your triggers are, but it's not the underlying cause that we needed to hear about when we're being diagnosed, and I think that's the hard part.^1–3 Whenever I'm speaking to someone who's just newly learning about it, they're jumping straight to what they would understand. Like, a standard boil to come up. And if I try to get too deep into the inflammatory responses, they kind of shut down because it's, it's too much for them to process4. So, they need something to be explained to them in really simple terms for them to grasp that it's not just a standard boil, but it's also not just like every other skin condition. 

Barry McGrath: I think you hit the nail on the head there. It's a difficult condition to explain, and I'm sure, Fiona, in general practice, you would have had difficulty explaining in a few, words or sentences, just exactly what HS is. I hear this all the time from HS specialists. 

Fiona Collier: And I think also, even over the last 10 years, an awful lot of new information has come, about how, the wider effects of HS, like, you know, associations with other chronic inflammatory conditions like arthritis and inflammatory bowel disease.⁵ So, I think a lot of even dermatologists don't really get the full extent of HS. 

Barry McGrath: Well, thankfully, the knowledge and research into HS explored⁶, and consequently, our understanding of the condition is evolving quite rapidly. Laurelle, you're very public about your HS on social media, etc. May I ask what has been the overall reaction to the type of information you're posting on social media? 

Laurelle Sterling: So, it's quite interesting because initially when I first started posting, I expected the reaction to be very negative and people grossed out, especially by some of the visuals of the condition, but it's been the complete opposite. I'm getting a lot of positive responses because there are so many people living with it. It's refreshing for me to keep putting awareness out there because, it's not normal, but it's a lot of peoples’ normal. So, I think the fact that they're seeing someone on their social media doing it, it's making them more comfortable to actually say out loud, I have HS too or now I know what HS is. 

Barry McGrath: Well, that's lovely to hear. I think HS is very conducive to social media because it affects primarily the intimate parts of the body. It affects people in their adolescence or early 20s, when they may be that bit more body conscious.^4,5 I guess seeing and identifying with someone else online can help, boost their confidence to actually go and seek help in the first instance. Seek that professional help.⁷ A question I'd like to put to both of you. Have you noticed any changes in how the public's understanding is, evolving over time? Fiona, I might begin by putting that question to you, please. 

Fiona Collier: I think the occasional times when HS has been mentioned on like television or in the media, for a while after that, people will say, oh, I, you know, I saw that Embarrassing Bodies programme about HS or something like that. And that's really powerful, I think, because then people will say, you know, that it looks like a really difficult condition to live with. And, yeah, I think that's a really powerful thing. But I think also it's really important that the general public see people and hear from people with HS, who are living their lives despite it and like positive, positive role models as well. 

Barry McGrath: Laurel, the same question to you, have you noticed any changes in public understanding of HS? 

Laurelle Sterling: I think through social media. Yes. It’s interesting because, I'd actually come across two people last week who told me they'd never heard of it, one being a healthcare practitioner, one general public. And it made me realise that in the social media aspect, yes, there's a lot of awareness being raised, but in everyday society, especially if they're not that involved with the social media, it's still going over their heads. There's still a lot of, misunderstanding that needs to be broken down.^1,2 

References 

1. HSDisease.com. Important hidradenitis suppurativa myths. https://hsdisease.com/living/myths. Accessed July 2024. 
2. HSDisease.com. Hidradenitis suppurativa myths and misconceptions. https://hsdisease.com/myths. Accessed July 2024. 
3. Vinkel C, Thomsen SF. J Clin Aesthet Dermatol. 2018;11:17–23. 
4. Zouboulis CC, et al. J Eur Acad Dermatol Venereol. 2015;29:619–644. 
5. Howells L, et al. Br J Dermatol. 2021;185:921–934. 
6. Martora F, et al. Medicina (Kaunas). 2023;59:801. 
7. UCB Data on file. 2024. HS patient advisory board. Summary report. p20. 

Section 3: How patients perceive HS 

Barry McGrath: Some key points there, Laurelle, but just to go back to the point we made earlier, particularly for people with HS, just the private nature of it, that they are seeking information online because they can do so privately, anonymously, etc., and just to. The. It's been our experience, at least in our group, that people find tremendous comfort in knowing that there are many others going through similar experiences.¹ Thank you both very much. I'd like to move on slightly and start exploring how patients or people with the condition perceive it and, Laurelle. As someone who has it, I'd like to begin with you. Do you recall back when you first learned about what was happening and when you first learned about your actual diagnosis? How did you perceive things? 

Laurelle Sterling: I honestly thought the world was ending. When I first started getting my symptoms, I definitely felt very alone. And especially because it was during my teen years, and I didn't know how to express that to anyone even close to me. And of course, with that understanding, even if I did mention it to a few family members, it would just be, oh, a little boil or a little bump will go. I've had that before, but not recognised as an issue to be dealt with medically. And by the time I'd gotten my diagnosis, because I'd reached a stage three and still had no answers or understanding of what it was or why it kept coming back. I was relieved to know that there was a name for it, but I was really disheartened because I heard in the same sentence that there's no cure for it.² So, I was very fixated on the pain that I was feeling in that current moment. 

Barry McGrath: Thank you very much for being so open and honest about that, Laurelle. I'm sure that many, many others will identify with the roller coaster of emotions you've experienced. Fiona, in the clinic, have you seen this type of reaction? And as an add on to that, I guess. Do people with HS understand the possibly the progressive nature of the condition? 

Fiona Collier: Yeah, I think that's a really important point. When patients first start to get, boils, I think. Oh, I've got another wee boil, there's something trivial, and then it becomes more frequent. And each time they get an antibiotic, and they think that'll be it, it won't come back again, and then it does come back again.² And then they start to get the scars, and then they become embarrassed and ashamed and still getting the same treatment, and now knowing that actually it's not really working and, this can go on for years.² And then when they eventually are either diagnosed by their GP or more commonly either self-diagnosed or referred to hospital, then getting the diagnosis, I think a lot of people are relieved¹, but I think very few people have heard of it before they are given the diagnosis. And I think it's really important how you give the information so that it's not you have this incurable condition and none of the treatments work very well, more, you know, this is something that we're going to work with you. So, I think, yep, as you say, you know, it's good to get a diagnosis, but then there has to be a follow on. And lots of people are also referred to surgery from general practice, rather than to dermatology, so they get in this cycle of repeated minor incision and drainage, and they don't get to see a dermatologist to treat the underlying chronic inflammation.³ So, again, there's a feeling that there's nothing else but surgery that can be offered. 

Barry McGrath: Thank you, Fiona. You've hit upon a few important points, particularly in regard to self-diagnosis. And this is where the likes of Laurelle and others are making a difference because we're increasingly seeing people. And I think I have this, whom do I go to? Can you direct me to a knowledgeable GP? And again, one of the double-edged swords with regard to social media is that on the one hand, it's, its helping people learn about and identify with others. But at the same time, then it can be an overwhelming experience when you go online and perhaps see pictures of the more severe cases and to say, oh dear, as Laurelle alluded to earlier on, I have this, and this is what my life is going to be like. I just like to explore how your thoughts and feelings and how, the wider perception of HS may be changing? Fiona, if I could begin with you. 

Fiona Collier: So, I think there's a lot more information out there, thanks to people like Laurelle largely, but also, quite a few more of the professional bodies have now got information online that patients can see, like the Primary Care Dermatology Society and, British Association of Dermatologists Patient UK. They've now all got bits about HS. So that's really helpful, but I think also, what we are backward about at the moment is addressing the non-skin parts of HS, you know, the pain and the discharge.^2,4 And I'm not sure whether that comes through on the sort of social media, side of things. 

Barry McGrath: Laurelle, would you care to comment on that? 

Laurelle Sterling: So, I am finding more of especially the other advocates and influencers I've met, especially during moments like Mental Health Awareness Week and stuff, they are being more vocal about the impact it’s having on them in terms of their mental health, in terms of their family life.^2,4 But it's still, it's still very quiet. Like, for example, when I go into work, I feel like there should be a window, perhaps where they come in and maybe even educate the employers about what their staff might be living with alongside HS, because it still goes over people's heads and you kind of start to feel a bit like a hypochondriac because you'll be saying, excuse me, I'm in a lot of pain and they'll think, it's not that bad it's a boil, and then you might have to go into a bit more detail and say, actually, this boils on my groin or like my knicker line. So, every time I walk, it hurts, every time I sit and stand, it hurts. And you have to really paint a really graphic picture, because people won't get it until they see it._2,4 

References 

1. UCB Data on file. 2024. HS patient advisory board. Summary report. p7, p20. 
2. Howells L, et al. Br J Dermatol. 2021;185:921–934. 
3. Collier F, et al. BJGP Open. 2021;5:BJGPO.2021.0051. 
4. Huang CM, Kirchhof MG. J Cutan Med Surg. 2021;25:591–597. 

Section 4: How dermatologists perceive HS 

Barry McGrath: Some key points there, Laurelle. Thank you very much for highlighting these. Again, people might see a boil or abscess or whatever, but because of where it is primarily strikes, it's the hidden areas of the body, and people don't see this.1 Fiona, I'd like to primarily focus on, how HS is perceived amongst healthcare and given your experience in general practice, has this changed over time? 

Fiona Collier: So, I'd say when I first started to become interested in HS about 15 years ago, not very many people in general practice had heard of it at all. Or they might have 1 or 2 patients who have been diagnosed in dermatology at a very advanced stage in HS, and that's what they thought HS was like. You know, people with this massive kind of, widespread areas of sinus tracts and that and they didn't actually relate these at all to the people that they saw fairly regularly with the boil in the armpit or the groin. Those two things weren't the same thing at all to them, you know, and so it was not recognised as an early stage in the same condition at a point when you could actually intervene and stop it progressing.² I think that has improved a little, I would say. But I think still amongst newly qualified GPs, they're saying that they've had virtually no or none at all formal education about HS in general practice.³ And still people are getting referred to surgery with recurrent boils and no diagnosis of HS, they're not seeing the dermatologist who could make the diagnosis.^4,5 So, I think it's a long way to go is basically. 

Barry McGrath: Yeah, I was just about to say that. So, while there has been progress and lots have been done, much more remains to do. And again, it's a difficult task because of the rapid changes that have been happening with the new treatment options becoming available and so on, it's a matter of getting that information to the GPs, who are already overwhelmed. 

Fiona Collier: But I would say that I think dermatology could take a lead in this because, for instance, in rheumatology, when new treatments became available and it became clear that treating rheumatoid arthritis early could prevent progression of the disease6, the rheumatologists took the initiative and told us, we want to see these people at an early stage, and they sent like information out to general practice saying these are referral criteria, we want to see these people, and that should be happening with HS. 

Barry McGrath: Fiona, you're in a unique position or you were in a unique position, in that you bridged between general practice, and you also worked in dermatology clinics. Did you notice any change in perceptions of HS among those in dermatology clinics? 

Fiona Collier: Yes. I think there has been an improvement. Now that there are more options and a lot more is known about what we can do for people with HS.⁷ I do feel the dermatologists are becoming interested in the condition⁷, and it is a fascinating condition. You know that people could specialise in. 

Barry McGrath: One question I would like to ask, is that many these guidelines advocate for multi-disciplinary care of people with HS^8,9 and as Laurelle has alluded to, the psychological impacts, the physical impacts, and the various other impacts¹⁰, what was your experience of how dermatologists are dealing with the leading said the multidisciplinary care for HS? 

Fiona Collier: So, we didn't have an MDT in the hospital that I worked for with HS. We had myself and one of the dermatologists set up an HS clinic where we had a surgeon who was prepared to do like, minor procedures, like de-roofing and, small incisions. But we didn't have access to an MDT, and I think part of the problem with that is that HS is so little known that it was hard to get them to believe that this was a common and serious condition that required an MDT because they knew nothing about it.³ I think MDT would be a wonderful, step for HS and would also not only give patients a lot more options but make people like surgeons and dermatologists and GPs and rheumatologists feel better supported in their management of HS patients because I think they often feel overwhelmed.^3,8 

Barry McGrath: Laurelle, you've alluded to how HS has impacted on various aspects of your life. How do you feel about how it was managed? How it currently is managed for yourself, and also from all the people that you're interacting with online, all the other people with HS? And are you seeing any changes in this regard, like just to link back into what Fiona was saying? Are people getting this multidisciplinary care that's so sorely needed? 

Laurelle Sterling: If I'm being honest, I don't think they are.³ But I do think the ones who are very aware of their condition and able to speak up for themselves more during their appointments are more likely to push for additional specialists to get involved.¹⁰ But, if you're newly diagnosed, you will have no idea what you need to ask for it. So, if I back over the last 10 years, I know I've benefited, like you say, from the commodities of having a physiotherapist. I've benefited from having a mental health therapist. I've benefited from having a nutritionist, but only as I started trying to find my own triggers anyway. But just those three alone. I would have never of thought needed to be considered. From my last appointment with dermatology, I was, I mentioned this on social media. I was really shocked that the surgeon that I saw the week before said he was going to get in touch with my dermatologist, and she confirmed that he did because he wanted to know what treatment offers, what treatment she was going to offer. That alone would have been amazing from the start to know that there were different departments liaising with each other to work out what's the best treatment at the stage I was at.¹⁰

References 

1. Zouboulis CC, et al. J Eur Acad Dermatol Venereol. 2015;29:619–644. 
2. Kokolakis G, et al. Dermatology. 2020:236:421–430. 
3. UCB Data on file. 2024. HIDRACENSUS 7.3. Insights-gathering Questionnaire Report. Summary report. p28–9; p32–7; p52. 
4. Collier F, et al. BJGP Open. 2021;5:BJGPO.2021.0051. 
5. Garg A, et al. J Am Acad Dermatol. 2020;82:366–376. 
6. Monti S, et al. RMD Open. 2015;1:e000057. 
7. Martora F, et al. Medicina (Kaunas). 2023;59:801. 
8. Touhouche AT, et al. Int J Womens Dermatol. 2020;6:164–148. 
9. Howells L, et al. Br J Dermatol. 2021;185:921–934. 
10. UCB Data on file. 2024. HS patient advisory board. Summary report. p7. 

Section 5: What we hope the future perception of HS will be 

Barry McGrath: It's encouraging to hear of this, this linkage between the different disciplines. We've explored generally how HS is perceived amongst healthcare. And thank you both for your insights on that. Fiona, I begin with you, and I put this question to you. Why do you think there is a taboo around certain chronic conditions? And then second part of that question is specifically around HS. 

Fiona Collier: So, I think the incurable label has a lot to answer for, actually. I think often with any incurable condition, there's a stigma.¹ And I think as people see that HS is a serious and devastating condition, but also manageable.¹ And there are treatments that can make people's lives, you know, easier, and they can have a relatively normal life even while living with HS. I think that's a big step in reducing the stigma.² But also, a lot more knowledge about what it is, the secrecy, around it, is, is a huge problem.^2–4 I think on both parts, patient and practitioner, there needs to be a lot of transparency.⁴ I think, patients need to be really willing for one to show their symptoms and speak up on what they've noticed. And on the other side, I think practitioners need to be really open and saying that they are just as in the dark as to navigate what could be the cause of this, but express that they're willing to take the measures and investigate alongside them. 

Laurelle Sterling: Each individual is going to need, a personal investigation into, what their circumstances are. What are they repeating that could be causing inflammation and what they've already done in the past to help themselves before they kind of throw generic ideas at them. 

Fiona Collier: I sometimes think that because a lot of people with HS are young women, they're not believed actually, as to the impact that it's having on their life. You know, I think doctors are guilty of thinking that they're exaggerating. They're overdramatising and all those things that young women tend to get accused of. And I think that's part of the reason why it's not been taken seriously in the past. 

Barry McGrath: Thank you both for highlighting this very important point. It's saddening to learn that such perceptions may still exist, and again, we can all work together on trying to address and change because that that is sorely needed. Laurelle as someone with HS. You alluded to earlier on, the fear, the embarrassment, stigma that may be associated with HS. Why do you believe that people are facing this fear, this embarrassment, the stigma when it comes to their HS diagnosis? 

Laurelle Sterling: So, from my personal experience, because of the areas it comes up in, especially in your years of puberty, being in the intimate areas, it's there's a stigma attached to it potentially being an STI.⁵ And if you haven't gone to, any doctor or GP or shown them if you're scared to do that, nine times out of ten is because you might also think you have an STI. You will start to think this is something to keep quiet.¹ This is something that I should figure out on my own and you'll probably go down the wrong route, but, I think overall that is the biggest stigma that I think needs to break. Now the public will need to play catch up in that regard. I think even with us, online, we're only just becoming comfortable with showing that actually it's impacting our bums, it is impacting our fronts as well, because for a long time we were just showing our arms. We were still shying away for a long time that it was affecting down below as well, because we didn't want the stigma. But I think without doing that now people are saying, oh, what's happening there, is the same thing you were talking about that’s happening up above, so it's breaking down slowly. 

Barry McGrath: I think the likes of you are playing a big role in that by being so public and open about it And, Fiona, you wish to comment here? 

Fiona Collier: Yeah. Again, about the stigma. Just it must be so difficult, particularly for people in late teenage early 20s, for instance, when they're starting out in a new relationship, to know how do they explain about HS to this person that they've just met? At what stage do they introduce that? You know that, I mean, yeah, that must be really difficult. 

Barry McGrath: I can certainly attest to that. And I'm sure Laurelle will regret it. What exactly do I tell people? When do I tell them, how much do I tell them? You know, we do hear people give up on that aspect of their lives entirely. They choose celibacy as a perhaps what you might call a maladaptive coping strategy. Overall, sexual health is a key component of our overall wellbeing. And to deny yourself that for whatever reasons, it's terribly sad. Have you ever had, or have you heard and, experienced similar? 

Laurelle Sterling: Definitely. So, at the time of diagnosis, I was quite lucky, I was in a relationship before I had any severe stage three flares that I almost felt like I didn't need to discuss. But then, as my symptoms did become severe, they were there to witness it alongside me, to see firsthand for themselves that I don't know what's causing it and I don't know how to make it stop. So, I felt safe in that regard. When that relationship ended, that was when I realised if I meet someone new, they weren't there to witness everything, so how do I explain that to them? And I just never did. I was never prepared to be that open and say, oh, I have this going on down there because I know that there's a stigma. And before I even get to explain in too much detail, they've probably already told themselves it's an STI.⁵ So, I just would eventually stop. It would be so much easier to just meet someone and say, I have HS, and they already know all about it. 

Barry McGrath: Yeah. And not have to go through that explanation. I would like to highlight that, at least within our group, that when such a discussion comes up, there's always a flood of comments also from people who are in stable relationships. And Laurelle, you mentioned it earlier about, that partner who is extremely supportive and understanding about your HS and people need to be made aware of this, I think that there are many wonderful, supportive boyfriends, girlfriends, husbands, wives, etc. partners who are willing to support and lend a helping hand, in that regard. In terms of where you'd like to see HS go in the future, and any thoughts you may have on shaping HS perceptions in the future. Laurelle, I'd like to put that question to you first please. What would you, what is your wish list? Your dream list of where things would be with HS in the future? 

Laurelle Sterling: I think we're already slowly heading in that direction. But my dream list, I would say, was to have a multi-disciplinary team.⁶ I think when you are being diagnosed, I think it would be amazing if instead of hearing, we don't know how to cure it, you would hear. Would you like to be set up with a mental health specialist¹ and a nutritionist and every other aspect of your life that's going to be affected, would you like to be offered support for it. We should get it from the jump, from the beginning of, when we're being diagnosed. I think I just really hope that the mental health side of things is taken in as strongly as the physical health.¹ 

Barry McGrath: That's a key point, Laurelle, in my conversations with people, particularly those who've had it long over years, decades, etc. Fiona, in terms of your wish list, for HS care and perceptions in future. What are your thoughts? 

Fiona Collier: So, I think I'd like to see change at the level of the health service organisation, really.⁶ I feel so much money is wasted on ineffective and inappropriate treatment for HS, like multiple incision and drainage or, repeated courses of, like, short term antibiotics that don't do any good.¹ If we actually started doing the things that actually help them, you know, it could be much better for people with HS, and much better for the health service. 

Laurelle Sterling: I, you just made me think about my last A&E visit, and I think that's another thing that I really wish just taking into consideration is the level of pain that we are in when we are dealing with certain stages, even if it doesn't look that angry on the outside,¹ I hope in the future that there's less dismissal of what a patient is saying they can feel, because you never know how deep that abscess is going internally, or how long they've been trying to ignore the, the throbbing of the skin, stretching or swelling.¹ 

References 

1. Howells L, et al. Br J Dermatol. 2021;185:921–934. 
2. Hedge B, et al. BMC Public Health. 2021;21:1022. 
3. Jankowiak B, et al. Dermatol Ther (Heidelb). 2020;10:285–296. 
4. Weinberger NA, et al. Health Expect. 2021;24:1790–1800. 
5. HSDisease.com. Important hidradenitis suppurativa myths. https://hsdisease.com/living/myths. Accessed July 2024. 
6. UCB Data on file. 2024. HS patient advisory board. Summary report. p7. 

Section 6: Close 

Barry McGrath: I think we're all in agreement there on some of our, our wishes. And I mean, we're not I don't think we're asking for the wheel to be reinvented here. It's just a matter of connecting the dots and plugging us into already existing resources. And just to be a bit more clever about how HS is managed, because it will be of benefit to people, with HS, their families, their networks, their employers, to your colleagues in healthcare, Fiona, and to society at large. Fiona, Laurelle, I'd like to thank you very much for this very interesting and thought-provoking discussion Fiona, what are the key things you'd want people to take away from this? 

Fiona Collier: So, basically HS is a chronic inflammatory condition which does affect the skin but affects many other aspects of a person's life as well.¹ That it can be managed,² and that people can live their life, with the proper help. And I think patients are going to lead the way in changing perceptions of it. 

Barry McGrath: Thank you very much, Fiona. Laurelle, would you care to sum up what your key takeaway from today's discussion is? 

Laurelle Sterling: The key thing that I hope people can take away, especially if they're a patient living with HS, is that they have absolutely nothing to be ashamed of. And, when they are speaking to healthcare practitioners, they should not be afraid to advocate for themselves and share what they have learned, especially in regard to how their own body is responding to different things to help speed up the process, and learning what that their personal triggers are. 

Barry McGrath: Thank you very much, Laurelle, and to both Fiona and Laurelle, I want to thank you both, very much for today's conversation. To the listeners, thank you for listening. We hope you enjoyed today's discussion. Make sure you like and subscribe to updates. In the final episode of this season, one of Under the Skin, we will explore how to improve outcomes for people living with this condition, which of course will be of benefit to them also to health care and to society at large. Thank you very much for listening. 

References 

1. Howells L, et al. Br J Dermatol. 2021;185:921–934. 
2. Martora F, et al. Medicina (Kaunas). 2023;59:801.