Hidradenitis Suppurativa (HS) in Ireland

In this blog, I will describe the HS landscape in Ireland, focussing primarily on patients, care, and research.

When I was diagnosed with HS by a locum GP in 2006 (after an almost 20-year delay), I did what many others do in such situations i.e., I went online and searched to find out what was available in terms of support(s), care, and research. I was disheartened (putting it mildly) to find out that there was very little happening in any of these areas. All I found was one clinician who had published a few papers on HS. On contacting this clinician’s office, I was told that they no longer had any research interest in HS. And that was it. Thankfully, there have been huge improvements since.

Despite the best intentions of healthcare professionals, family, friends, relevant organisations, and others, only those living with HS (or indeed any other condition[s]) can fully understand what it’s like to have it. Going online in 2006, I was unable to find any patient support groups. However, for over a decade, this private Facebook group offers peer-to-peer support to those living in Ireland directly affected by HS, and also to their families, friends, carers, and others (such as frustrated healthcare professionals keen to learn how to best care for their patients). In this group, we share information, experiences, and knowledge so that we may learn from one another how best to get by with this awful condition. Whilst not for everybody, many members view this network as a lifeline, especially those who have been alone with their HS for long periods. Being able to share experiences can be helpful for many.

HS Ireland, a patient-led association dedicated to supporting those affected by HS and to communicating timely, relevant, and reliable disease information, has recently emerged from the aforementioned Facebook support group. We are also increasingly involved in HS research with clinicians, academics, industry, and others – involving those affected by diseases in research is a win-win situation for all. In addition to Facebook, HS Ireland also operate other social media platforms such as Instagram and Twitter.

We are fortunate in Ireland in that two specialty HS clinics have been established, with knowledgeable and empathetic healthcare staff doing their best for patients, who have by and large fallen through the cracks of healthcare and social systems heretofore. These HS clinics are located at Tallaght University Hospital (led by Professor Anne-Marie Tobin), and also at St. Vincent’s University Hospital in Dublin (led by Professors Rosalind Hughes and Brian Kirby). These clinicians are also active HS researchers (selecting the links on their names will yield Pubmed search results for some of their HS-related work). Laboratory-based academic researchers have also been investigating the molecular mechanisms underpinning HS, such as Professor Jean Fletcher at Trinity College Dublin. Some key HS publications have emerged from Prof. Fletcher’s laboratory, as listed here.

The HS community in Ireland is extremely fortunate to have the support of the good people at the Irish Skin Foundation for numerous years. This is a national charity dedicated to supporting those living with skin conditions in Ireland. The Irish Skin Foundation features an HS section on its website, highlights HS stories from those living with the condition, and has hosted numerous HS awareness, education, and information events over the years. Furthermore, they run a very popular Ask-a-Nurse helpline, a free and confidential guidance service for those with HS (and other skin conditions), operated by empathetic, experienced, and knowledgable dermatology nurses.

As outlined, the HS landscape in Ireland has altered considerably in recent years, for the benefit of all affected by HS. While much has been done, there is much more to do.

Featured

Hidradenitis Suppurativa and Patient Advocacy

Talking About HS Advocacy

A February 2022 podcast from the European Academy of Dermatology and Venereology (EADV) featured HS. This was an intriguing discussion between two HS experts, Bente Villumsen, President of Patientforeningen HS Danmark and Prof. dr. Christos Zouboulis, President of the European Hidradenitis Suppurativa Foundation e.V. (EHSF). Both are vastly experienced when it comes to HS: Bente has been living with HS for decades and has been advocating on behalf of HS patients for years. Prof. Zouboulis has been taking care of HS patients and researching the condition for many years. What these two don’t know about HS probably isn’t worth knowing.

If you are interested in HS in any way, please listen to this conversation between Bente and Prof. Zouboulis (approximately 30 minutes). If you care for those with HS, this is essential listening as it will likely expand your understanding of how challenging living with HS can be. If you have HS and wish to advocate for those with the condition, Bente outlines many of the challenges she has faced in doing just that.

Resilience and the HS Patient

 

Camus

 

I distinctly recall first reading the above Camus quote, thinking the great author had somehow found his way ‘under my skin’. I am sure this popular quote means a lot of things to different people; for me, it neatly describes my HS journey, reflecting the ongoing search to find the inner resolve to continue against the Hydra-headed challenges that HS can present. In other words, finding ‘resilience’. Some recent research suggests that resilience may indeed help those with HS.

 

What is Resilience?

Simply put, resilience is the ability to adapt or change. Merriam Webster define it as the ability to recover from or adapt to change to misfortune. HS has been associated with depression, and resilience can help lessen the impact of depression. This begs the question of whether resilience could help with HS.

 

Why is resilience important?

Life can deal each and every one of us some cruel hands. The arts frequently try and deal with this, as illustrated widely in poetry, film, literature, and song below:

From the movie Léon the Professional (1994; Luc Besson):

Or, as The Great Bard put it:

Nativity, once in the main of light,
Crawls to maturity, wherewith being crown’d,
Crooked eclipses ‘gainst his glory fight,
And Time that gave doth now his gift confound.
Time doth transfix the flourish set on youth
And delves the parallels in beauty’s brow,
Feeds on the rarities of nature’s truth,
And nothing stands but for his scythe to mow:

– William Shakespeare; Extract from Sonnet No. 60.

 

From the movie The Departed (2006; Martin Scorsese):

 

He stood at the window of the empty cafe and watched the activites in the square and he said that it was good that God kept the truths of life from the young as they were starting out or else they’d have no heart to start at all.

– Cormac McCarthy (2012). “All the Pretty Horses”, p. 291, Pan Macmillan

Many of us are misguided as youths, believing that life will magically get a whole lot better when we are older. It typically doesn’t. As McCarthy surmises above, if we knew what lay ahead, would any of us bother? Would we ever get out of bed?

Resilience is an important life skill that allows us to cope with the various “slings and arrows of outrageous fortune” that life can throw our way. As we age, life tends to throw  more and more of these challenges at us especially in terms of our health as the irrevocable physical decline inevitably sets in. Such is the fate of humanity.

Coping with HS is a challenge. With HS, it is often a case of one step forward; two steps backward. Just when you think you are doing ok, you wake up some morning with new lesions destroying your peace, setting off the all-too-familiar dreaded repeating cycles of inflammation, pain, and discharge.

 

Resilience and the HS Patient:

Depression is known to be associated with HS, and can place a significant burden on the patients’ quality-of-life. Dr. Joslyn Kirby and colleagues looked at the association of resilience with depression and quality of life in 154 HS patients from the US and Denmark (Kirby et al., 2017).

Adult HS patients were asked to complete a survey comprising four questionnaires looking at, among other things, their demographics, and measures of resilience, depression, and quality of life.

Kirby and colleagues found that within the HS patient population studied, resilience can influence depression. An increase in depressive symptoms had less of an effect on the quality of life of HS patients who had high resilience levels.

 

Developing Resilience:

The good news about resilience and the HS patient is that many of us already have existing inner resolve, as illustrated clearly in these patient testimonials here and here. If you are a HS patient reading this, you have come this far thanks to your resilience. It’s embedded in our DNA. We are, after all, the children of survivors of those who experienced multiple adversity throughout history.

Recent research indicates that resilience can also be taught. Dr. Kirby and colleagues recommend introducing resilience training for those with HS who may be more susceptible to depression.

An increasing number of online resilience training courses are becoming available. A Google search conducted today (18 Apr 2020) reveals multiple free online courses teaching resilience. You have nothing to lose by trying some of these out. Learning or refining resilience will help you in your general life, and may well assist you in dealing with HS.

 

 

References:

Kirby, J.S., Butt, M., Esmann, S. and Jemec, G.B.E (2017) ‘Association of Resilience With Depression and Health-Related Quality of Life for Patients With Hidradenitis Suppurativa’, JAMA Dermatol., 153(12), 1263–1269, OPEN ACCESS, [online], available at: doi: 10.1001/jamadermatol.2017.3596

 

 

 

 

 

 

 

 

 

 

 

 

 

Ninth Conference of the European Hidradenitis Suppurativa Foundation

EHSF2020

 

The first quarter of 2020 will be widely remembered for all the wrong reasons: the year began with an environmental catastrophe (the Australian bush went up in flames), and was followed by the political nightmare that was Brexit. The tremendous loss of life caused by global COVID-19 pandemic that swept (and continues to sweep) around the globe will be remembered for many a year to come.

Buried amongst all this, the HS community had some cause for optimism, for from 05 to 07 February 2020, the 9th Conference of the European Hidradenitis Suppurativa Foundation (EHSF) (EHSF2020) took place in Athens, Greece. This was the largest HS gathering to date: while Europe lost some members on the political front, the EHSF gained many new members with 422 delegates, from 48 countries spanning four continents, attending the event.

It was a very lively meeting involving HS patients, physicians, researchers, and other stakeholders in the HS community, and we will be reaping the rewards of this event for years to come. The full line up and programme of events is available here. I was fortunate to be in attendance and I outline some highlights from this wonderful event below.

 

HS Nurses (Finally) Take Centre Stage

The first session at EHSF2020, “Hidradenitis suppurativa nursing school”,  was the brainchild of Israel-based nurse Shani Fisher, who co-chaired this session and concluded the nursing school session with one of the most stimulating and interesting HS talks I have witnessed.

Shani Fisher

Shani oozed compassion and care and her desire and drive to do something effective for HS patients was abundantly evident. She recounted her first meeting with a HS patient a few years previously, and remarked that she left the consultation room that day asking herself “How can anybody live like this in the 21st century“? She resolved then to try and do something and Shani is now, among other things, in the process of co-ordinating a global network of HS nursing interests.

 

Shani Fisher Slide

Having nursing expertise central to such conferences is essential if an integrated and multidisciplinary approach to managing HS patients is to be achieved. Such a patient management strategy is widely recommended by many experts, given the multiple factors known to contribute to the condition.

During this session’s open discussion between speakers and the audience, a leading clinician from Denmark (where they show the way in many respects in HS patient care, treatments, and research) remarked that they see a high turnover rate of nurses at their HS clinics. Most nurses there last ~ 1 year at most, and find dealing with HS can its toll and lead to burnout and stress……….

 

HS Pioneers Acknowledged

HSBook

When the history of HS is written, the pictured publication (published in 2006) will be noted as a significant landmark, and the book’s editors will play major roles in how the HS story unfolded. It was fitting that two of the editors were present at EHSF2020 and were acknowledged for their leviathan contributions to HS. Prof. Gregor Jemec (Denmark) and Prof. Jean Revuz (France) have been actively researching HS for many years, long before it became fashionable to do so. Indeed, they are two of the main reasons we have seen the recent huge increase in HS research. I was humbled to witness these two giants in the HS field give talks outlining their careers in HS:

Prof. Jean Revuz delivering his talk “My life career: the fight against HS“:

Revuz

Prof. Gregor Jemec presenting “Choose your adversary with care – and help the sick“:

Jemec

Prof. Jemec’s final slide simply stated: “Patients are waiting“.

We can see a lot further in the HS community these days, largely because we are standing on the shoulders of giants such as Prof. Revuz and Prof. Jemec.

 

EHSF Global HS Community

The EHSF held its first gathering in 2006 with ~ 30 attendees, and has grown at every subsequent meeting, with 422 attending EHSF2020. While most speakers and delegates were from Europe, many North American-based researchers attended and spoke also. A very welcome feature at EHSF2020 was HS research from around the world, and the final session saw presentations from South America (Brazil), Asia (Japan), and Africa (Ghana). While there have been a few recent HS papers from Japan and Brazil, it was great to hear about African HS research. The entire HS community will grow, learn, and benefit from each other in this manner.

 

Meeting the HS Researchers

At the EHSF2020, I made a determined effort to talk with as many researchers as I could asking them about what attracted them into HS research. I’ve been curious about this for some time, as a friend (with HS) recently quipped, “HS ain’t sexy”. It could, in fact, be argued that HS is the antithesis of sex, but I digress.

Every researcher I spoke with replied with more or less the same answer, along the lines of : “if you take the time to listen to the HS patient and their experience, you can’t help but feel moved and compelled to do something”. Each time I heard that, I had to refrain from becoming emotional.

I was struck by the compassion of each and every one of all these wonderful, hard-working, and dedicated people that I spoke with. Their words brought to mind the words of the late Dr. Martin Luther King Jr., who when addressing a gathering in Montgomery, Alabama, in 1957, said:

“Life’s most persistent and urgent question is, ‘What are you doing for others?’”

We are fortunate in the HS community to have such inspiring and dedicated people working so hard on the patient’s behalf.

 

 

 

HS: Viewer Discretion is Advised

1200px-Viewer_Discretion_is_Advised.svg

I work as an editor of scientific and medical information. Prior to that, I spent ~ 10 years in scientific and medical research. Over the years, I have seen a lot that can go wrong with the human body, so much so that very little fazes me in that regard and it would take something quite extraordinary to shock me.

In my day job, I work as part of a team of editors and we frequently call upon one another to seek advice on editorial matters. Recently, a colleague asked me to do just that, but before I viewed the content I was taken aside and warned that “viewer discretion is advised.” I was taken aback by this, as I have never heard such a warning comment before. The colleague who said this is also experienced with scientific and medical content

On screen, my colleague was viewing some pictures of various body parts, mainly genitalia, anal, and other intimate body parts that were deformed, maligned, scarred, and mutilated by disease. I immediately recognised it as HS: no surprises there given I have seen it on my own body over 30+ years. My colleague, however, was visibly reeling from what they were looking at and again cautioned me about me about the nature of the content. I had to refrain from a) telling them I only knew too well as I had been living with this most of my life, and b) throttling them for reacting in such a way – if they were struggling with viewing HS, imagine what it’s like living with it. In hindsight, I ask myself what the hell would doing that have achieved?

For a long time I have shied away from physical intimacy with others. My self-esteem and body image have taken a complete hammering from HS, something experienced by many in the HS community as recent research has highlighted here, here, here, and here (and I suspect in a few other elsewheres). Friends and family (the females that is) tell me the superficial is not important and that “the right person” will see beyond the superficial. I certainly hope so and cling on to that belief, but I can’t get away from the fear that my HS will provoke disgust in others, as it did in my (experienced) editor colleague, and although they do their best to disguise it, I have seen such looks of horror on the faces of (some of) the many healthcare professionals who have examined me over the years.

I had slowly been making progress in that regard. I swim in a local pool most days and doing so helped me to realise that none of us has the perfect body. Translating that knowledge to my personal life is another challenge though. Sometimes it can be hard to escape the atrocity exhibition that HS can be. That’s the thing with HS: just when you feel progress has been made with one thing, another challenge crops up and knocks you back. A bit like life really, like Sisyphus.

 

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2010–2019 Sees Huge Increase in HS Research: The Figures

Been down so long it looks like up to me.

Richard Fariña (1966). Been Down So Long It Looks Like Up to Me. Penguin Modern Classics.

 

Introduction:

As we set out on the third decade of the twenty-first century, I thought it timely to take a look at HS research outputs during the last decade, 20102019, focusing on the numbers. A ’10-year challenge’ of sorts if you like.

The figure below shows the HS research output over 20102019, with the data from Pubmed using the search term “hidradenitis suppurativa”, from 01 Jan 2010 throught 31 Dec 2019. 

 

HSPublications2010-2019

20102019 Key Features:

  • The decade began as the previous one had ended i.e., minimal HS research output with just 76 HS papers published during 2010 (~ 1.5 HS papers per week; hardly enough to keep anyone actively researching HS very busy reading).
  • By the end of the decade, however, this yearly average had grown considerably, to 495 papers published throughout 2019 (~ 9.5 papers per week), representing a ~ 6.5-fold increase over 10 years.
  • From 2016 through to the end of 2019, more HS research papers (1381) were published than in all  years combined since HS was first described in the scientific literature ~ 180 years ago. Or, to look at it another way, some 55% of all the HS papers written have been published since 2016.

 

This huge increase in HS research during 20102019 reflects a general trend of increasing HS publications per decade over the past ~ 80 years, as illustrated below:

HSPublicationsDecade

HS Conferences:

There are now two firmly established HS-specific research conferences every year. At these events, dermatologists, scientists, surgeons, and others gather to discuss the latest  research and plan future research. This is done to try and further understand the condition, improve existing treatments, develop new treatments, and ultimately try to improve the quality of life for HS patients.

i) The 8th Conference of the European Hidradenitis Suppurativa Foundation in Feb 2019 was the largest HS conference to date, with over 400 (mainly, but not exclusively, European-based) delegates in attendance. The 9th Conference of the European Hidradenitis Suppurativa Foundation occurs in February 2020 in Athens, Greece; ehsf2020.com.

ii) The 4th Annual Symposium on Hidradenitis Suppurativa Advances in late Oct./early Nov. 2019 attracted over 250 delegates (almost 10% of whom were HS patients). The 5th Annual Symposium on Hidradenitis Suppurativa Advances happens in October 2020 in Montreal, Canada; hs-symposium.org.

In addition, the 28th European Academy of Dermatology and Venereology Congress in 2019 devoted a substantial portion of its programme to HS.

 

From the Bench to the Bedside:

So what does all this research mean for the HS patient? The ultimate aim of clinical research is to convert laboratory results into drugs/treatments that can be given to patients (translate the results “from bench to bedside”). All medications undergo extensive testing to ensure a) they work, and b) they are safe before they are given to patients. These “clinical trials” can take years and go through several different stages or phases. There is a high failure rate in this process due to the strict testing.

As of January 2020, there are some 49 clinical trials in progress in the US for HS (as listed on the US Clinical Trials Database). This is 49 trials more than were happening in 2006, when I was diagnosed with HS. In the European region, some 14 in the EU (EU Clinical Trials Register), 14 trials more than were happening in 2006 when I was diagnosed. [generally, more trials are done in the USA as the USA spends the most money on healthcare than anywhere else in the world – many drugs that are licensed in the USA usually are approved in the EU shortly afterward].

Even if just a fraction of these make it through the clinical trials, there will be more medications available than now. Currently, just one medication is approved for HS treatment use in the EU, US, and other markets including Australia, Brazil, Canada, and Japan, illustrating just one of the many unmet needs for HS patients.

 

 

 

 

 

 

HS Global Survey of Impact and Healthcare Needs (VOICE)

counselling-3630323_1280

 

The word “patient” comes from the Latin pacient meaning “to suffer” or “to endure” (patient etymology). Some believe that this term should be changed to reflect a truer reflection of the value a patient can bring to understanding his/her own experience. In 2003, Ian Kennedy wrote that a patient is an expert “in his or her own experience, feelings, fears, hopes, and desires” (Kennedy, 2003). Increasingly, governmental health services, agencies, funding bodies and the like are taking a similar view and are beginning to involve patients as research partners to inform healthcare research. It is unique to the healthcare industry that the end consumers i.e., patients, have heretofore had little say in what drives their industry.

In 2017, the HS community embarked on a project involving patients and physicians, the Global Survey Of Impact and Healthcare Needs (Global VOICE), and the results of this project, involving participants from 27 affiliations from 14 countries spanning four continents, have recently been published (Garg et al., 2019) in the Journal of the American Academy of Dermatology (JAAD). After being hidden behind the journal’s paywall for several months, I am delighted to see that this has finally been published as an open access article, meaning that patient, carers, and other interested parties are now able to access this important publication. This is only fair as it is the patients’ voice, and patients (and other stakeholders who may not have a subscription to JAAD) should be allowed to access this study. In this post I will summarise the main findings from this project.

 

Methodology:

A questionnaire, comprising 50 questions, was designed by content experts and HS patients to capture details on patient demographics, disease impact on life, perspectives on disease diagnosis and care, disease-associated pain and symptoms, associated health conditions (comorbidities), and treatments received over the course of their disease.

Patient recruitment occurred between October 2017 and June 2018 from 27 institutes in 14 countries across four  continents. Most of these institutes were HS referral centres. Over 1900 patients completed the survey; of these, 1299 met the inclusion criteria and were analysed further. Most respondents (> 90%) were from Europe (55%) and North America (38%).

 

Key Findings:

The main findings from this patient survey can be summarised as follows:

  • average time to HS diagnosis was 10.2 years; most patients (64%) visited a physician five or more times before receiving their HS diagnosis
  • more than two in five (43%) reported that HS had an “extreme” impact on their quality of life
  • approx. 15% were disabled
  • one in eleven (9%) had contemplated suicide
  • most (80%) reported at least one HS-associated medical condition (known as a ‘comorbidity’); of these, depression (36%) and anxiety (36%) were the most common
  • almost half (46%) were dissatisfied or very dissatisfied with current treatments available to them
  • some nine in ten (91%) selected pain as their primary symptom

 

Many of these findings deserve further comment. Firstly, in this digital age, where information can be rapidly exchanged and shared around the world at the click of a button, it is downright shameful that it is taking over 10 years on average for HS patients to receive their diagnosis. Similar to most other medical conditions, diagnostic delays can have serious implications for patient well-being. This delay is especially frustrating  as HS diagnosis is a relatively simple procedure that can be performed in minutes (without the need for any diagnostic tests), once the treating physician knows what to look for, as described here. Bear in mind also that most of the patients were recruited from HS referral centres in countries where there are relatively high levels of  knowledge and awareness of HS (13 of the 17 countries comprising the author list are in the top 25 wealthiest countries in the world, as measured by GDP, according to this list; in addition, most of these countries have HS researchers actively publishing research. I am assuming that HS awareness, will be higher here than in less-wealthier nations). I am left wondering just what is the true ‘global’ HS diagnostic delay from other countries (not included in the VOICE survey) where HS awareness may not be as high?

Over 40% of patients in this VOICE study reported that HS had “an extreme impact on their quality of life”. Adding further weight to this, some 15% of HS patients were classified as disabled and unable to work due to disease; in addition, almost 10% were unemployed due to HS. Both figures highlight just how serious HS can be. More than one in eleven HS patients admitted contemplating suicide, which is about as serious as it can get. In my 30+ years of living with HS, I have frequently encountered others dismiss the condition as being “just boils”. There is an increasing body of evidence showing that HS can have profound effects on many aspects of a patient’s life, such as the emotional, financial, professional, sexual, physical, and psychological, to name just some. Hopefully, the results of this study, coupled with the aforementioned growing body of evidence, will highlight just how serious an impact on patient quality-of-life HS can have.

Over 90% of patients selected pain as their primary symptom, which is startling, as (in my experience) HS pain is another aspect of the condition that is not treated accordingly. Illustrating this, none of the recently published (from 2015–2019) international guidelines for treating and managing HS give specific pain management recommendations (Hendricks et al., 2019). At the SHSA2019 conference, there was a session about HS pain management, which is a step in the right direction at least. However, as the VOICE results stress, pain is the most important issue for most HS patients and one that has not been adequately dealt with heretofore. Clearly, significant gaps remain in terms of pain management for HS patients.

 

Unmet Needs:

The VOICE study also identified numerous unmet needs for HS patients, as follows:

  • Diagnosis and Care: adressing lack of disease awareness, diagnostic delays, the cost and quality of care
  • Symptoms: specifically the control of symptoms
  • Life Impact: assessment of life impact, mental wellness
  • Comorbid Conditions: research into, development of guidelines on, and establishment of interdisciplinary medical teams to treat HS-associated conditions
  • Treatment: safe and effective treatments

Several mechanisms of actions for each of the foregoing unmet needs were proposed. My own hope in reading this paper is that the VOICE survey results will help inform dermatologists and other healthcare professionals, industry partners, and other HS stakeholders about future directions to channel HS research, treatment, and management resources.

Do you think that most of the unmet needs were highlighted? Are there other unmet needs you would like to have seen included or mentioned?

 

Discussion:

This is a very significant and welcome study and is the first peer-reviewed comprehensive publication involving as many HS patients to such an extent. The VOICE study highlights a number of critical findings that treating healthcare professionals, researchers, caregivers, and other interested parties need to be aware of.

Pain was reported as the most important symptom for the overwhelming majority of patients. As a fellow HS patient, I am not surprised at all by this finding. What is surprising is that it has taken this long for this aspect of living with HS to be recognised thus. Some other important findings from this study include the continued diagnostic delay experienced by many HS patients (longer than earlier studies, involving fewer patients, had reported, as discussed here), the lack of universally effective treatments, and stresses how potentially debilitating HS can be with a substantial proportion of patients disabled due to HS. Most patients reported associated illnesses including depression and/or anxiety. Furthermore, the VOICE survey emphasises that a multidisciplinary team may often be required to effectively manage this life-long condition including, but not limited to, dermatologists, surgeons, pain specialists, mental health, and behavioural health professionals. Many healthcare workers and researchers have been advocating such an approach for years but this is not often the case, as the study highlights.


The authors acknowledge that there were certain limitations to this study. For instance, the data was self-reported and may be prone to misinterpretation and recall bias i.e., inaccuracy in remembering specific events or the omission of certain details. The quesstionaire used in the survey has not been made available thus far, so the reader does not know the specifics of the 50 questions, how these were phrased, and so on; all these can influence how questions are answered. In addition, it is not stated in which language(s) the questionnaire was published and distributed to patients. Were the patients responding in their native or second/third languages? Such factors may also influence how questions are answered.

VOICE  responses came from HS patients in just 14 countries, while there are 193 nations listed with the United Nations currently. Most VOICE survey respondents (91%) were from Europe and North America; collectivey, these regions account for about one eight of the world’s population; respondents from the rest of the world (with about seven eights of the world’s population totalled just 7% of VOICE. Despite these limitations, many lessons for all concerned parties are to be learned from this study.

Finally, the HS patients involved in VOICE identified several unmet needs that should be addressed by the HS community as a matter of urgency. Involving the HS patient in HS research policy is paramount if relevant advances in disease understanding, treatment, and care are to be met.

 

References:

Garg, A., Neuren, E., Cha, D., Kirby, J.S., Ingram, J.R., Jemec, G.B.E., Esmann, S., Thorlacius, L., Villumsen, B., del Marmol, V., Nassif, A., Delage, M., Tzellos, T., Moseng, D., Grimstad, Ø., Naik, H., Micheletti, R., Guilbault, S., Miller, A.P., Hamzavi, I., van der Zee, H., Prens, E., Kappe, N., Ardon, C., Kirby, B., Hughes, R., Zouboulis, C., Nikolakis, G., Bechara, F.G., Matusiak, L., Szepietowski, J., Glowaczewska, A., Smith, S.D., Goldfarb, N., Daveluy, S., Avgoustou, C., Giamarellos-Bourboulis, E., Cohen, S., Soliman, Y., Brant, E.G., Akilov, O., Sayed, C., Tan, J., Alavi, A., Lowes, M.A., Pascual, J.C., Riad, H., Fisher, S., Cohen, A., Paek, S.Y., Resnik, B., Ju, Q., Wang, L., and Strunk, A. (2019) ‘Evaluating Patients’ Unmet Needs in Hidradenitis Suppurativa: results from the Global VOICE project’, JAAD, [online], OPEN ACCESS, available at: doi: 10.1016/j.jaad.2019.06.1301, [accessed 28 Dec 2019].

Hendricks, A.J., Hsiao, J.L., Lowes, M.A., and Shi, V.T. (2019) ‘A Comparison of International Guidelines for Hidradenitis Suppurativa’, Dermatology, 1–16, [online], OPEN ACCESS, available at: doi: 10.1159/000503605, [accessed 30 Dec 2019].

Kennedy, I (2003) ‘Patients are experts in their own fields’, BMJ, 326, 1276, [online], OPEN ACCESS, available at: doi: 10.1136/bmj.326.7402.1276, [accessed 28 Dec 2019].

 

Detroit Does HS: SHSA2019

Webpage

Between Friday 01 Nov 2019 and Sun 03 Nov 2019, the 4th Annual Symposium on Hidradenitis Suppurativa Advances (SHSA2019) took place in Detroit, Michigan, USA. This was rhe second major gathering of 2019 devoted exclusivly to HS research, the other major conference being the European HS Foundation (EHSF2019) earlier in the year.

Having attended many academic conferences over the years, I was sure I knew what to expect at this event, but thankfully I was wrong on that. What set the SHSA2019 from EHSF2019, other events with a HS-heavy content (e.g., the recent EADV conference mentioned here), and other academic conferences in general, was that the 261-strong attendance at the SHSA2019 comprised clinicians, scientists, industry partners and, crucially, some 20 HS patients. The HS patients were critical to the event and played a key role throughout and I haven’t ever attended an event that was so patient-centric, which is, lest we forget, the ultimate reason that events such as this take place in the first place.

Day 1 of SHSA2019 kicked off with the wonderful host Dr. Iltefat Hamzavi, Detroit-based dermatologist and President of the HS Foundation (one of the main organisers of the event), setting the tone by urging all in attendance to listen to the HS patient, a call that was repeated throughout the event.

Hamzavi kick off

Image Source

Unusually for such an event (or at least those I have attended), patients spoke at the beginning of many of the sessions, helping to focus the minds of the delegates in attendance. This was a master stroke by the organisers in my opinion. After each session, I witnessed patients in discussion with other attendees, the latter listening closely to the patient’s experiences, and this was evident over the weekend. Below is an image taken by one HS patient who got to address the symposium.

Sandra from the stage.jpg

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On Day 2 of the event, a very important discussion took place on pain management in HS, a topic that is paramount to most, if not all, HS patients, but one that has been largely overlooked. It was exciting to witness such a lively discussion and to learn about many (non-conventional) pain management strategies which were given due consideration, including, but not limited to:

  • medical marijuana
  • acupuncture
  • psychological approaches

There was very little agreement among the delegates on appropriate pain management strategies, but it was the start of a discussion that desperately needs to be had among the HS community as a matter of urgency. As an aside, there have been several reports in recent years about HS patients abusing alcohol, cannabis, and opioids as a means of coping with the pain that many face dealing with HS on a day-to-day basis (a literature review of this topic is available in this open access article by Aldana and Driscoll, 2019).

A highlight for me on Day 3, the final day, was hearing from Suzanne Moloney, a HS patient and founder of Hidrawear, a company she established to meet some of the unmet wound care needs of HS patients. If this isn’t impressive enough, Suzanne has also tried her hand at being a HS citizen scientist, and here she is presenting some of her work to the SHSA audience:

Suzanne

I very nearly did not attend this event as in the preceding days I developed a nasty and painful HS abscess on the inner thigh making walking extremely difficult. No major shocks there; however, what was tough to take was that this was the first HS flare I had experienced in a number of years. Initially, I was devastated that it was beginning to happen again, as I (and as any other HS patients will appreciate) know only too well what this could potentially spell, and years ago I resolved to do everything within my means not to return to that dark place and have worked very hard towards that end.

 

Like a wounded animal, I needed to retreat into a corner and lick my wounds for a bit before bouncing back. Attending SHSA2019 was just the tonic I needed, and soon I was suffused with a sense of optimism for the future. I was inspried by the event, and am hopeful for future of the HS patient, which has been all too lacking heretofore. I found it a privilege to witness many of the leading and established HS researchers challenge themselves and each other to not rest on their laurels, but aim to do better and improve the lot of the HS patient. Even more refreshing was the dedication, ambition, and above all, the apparent compassion of many of the younger HS researchers in attendance. They seemed keen to take on the challenges being set by the senior researchers, and the quality of the research of these younger HS researchers was apparent. They were also very curious about the HS patient and were very keen to listen and learn from the HS patient.

I left the event with a heavy heart, sad at leaving such a wonderful group of people who  care about the HS patient, but glad that I had been in attendance to witness such a wonderful event.

The 5th Annual Symposium on Hidradenitis Suppurativa Advances will take place in Montreal, Canada, from Oct 31 – Nov 2, 2020. I have started planning and saving for the event already.

[U]ntil the day when God will deign to reveal the future to man, all human wisdom is contained in these two words,—‘Wait and hope.’

The Count of Monte Cristo, Alexandre Dumas

 

Reference:

OPEN ACCESS: Aldana, P.C. and Drisoll, M.S. (2019) ‘Is substance abuse more prevalent in patients with hidradenitis suppurativa?’ Int J Womens Dermatol., [online], available at: doi: 10.1016/j.ijwd.2019.09.007 , [accessed 04 Nov 2019]

 

 

 

 

 

28th EADV Congress 2019 Does HS

28thEADV2019

I have posted in recent times about some initiatives that give those of us in the HS community reasons for hope. Among these are the increases in HS research in recent years, the two large 2019 conferences dedicated entirely to HS (EHSF2019 and SHSA 2019), and the recent decision by a leading dermatology journal to devote an entire issue to HS. There is, however, further cause for us to be even more hopeful.

From 09 to 13 October 2019, The European Academy of Dermatology and Venereology (EADV) host their 28th congress in Madrid, Spain. A significant portion of the scientific programme of this conference is dedicated to HS. You can see the full scientific programme for this meeting here.

Dermatology, the branch of medical science that deals with the diagnosis and treatment of skin diseases, is one of the largest disciplines in medicine, with over 3000 skin conditions described to date (Lynch 1994; Serge 2006). Venereology is the branch of medical science dedicated to the diagnosis and treatment of sexually transmitted infections. Hundreds of millions of people around the world, at a minimum, are living with sexually transmitted infections (World Health Organization 2019). While those in the HS community (the patient, their family, caregiver, and treating physician) have long known that HS can have a profound impact and impose significant burdens on those with the condition, the fact that the EADV are devoting such a significant proprotion of their 28th congress to HS is perhaps recognition that others in the wider medical field are realising this too. Wider recognition of this little-known condition is desperately needed if we are to reduce the criminally long HS diagnostic delays, advance HS treatments, and improve the quality of life of those with HS.

 

References:

Lynch, P.J. (1994) ‘Dermatology’ (House Office Series), Williams & Wilkins, Philadelphia, PA.

Serge, J.A. (2006) ‘Epidermal barrier formation and recovery in skin disorders’, J Clin Invest., 116, 1150–1158, [online], available at: doi: 10.1172/JCI28521, [accessed 29 Sep 2019].

World Health Organization (2019), Sexually transmitted infections (STIs), [online], available at: https://www.who.int/news-room/fact-sheets/detail/sexually-transmitted-infections-(stis), [accessed 05 Oct 2019].

 

The Italian HS Experience

JEADVCover

The latest issue (October 2019) of the Journal of the European Academy of Dermatology and Venereology (JEADV) is dedicated to HS, from an Italian medical practitioner’s experience. The issue comprises an editorial, seven original HS articles, and five HS case reports from Italy. The full table of contents can be accessed here.

This is a most welcome development for the HS community. There are over 3000 skin conditions described so far (Lynch 1994; Serge 2006), and that list continues to grow. When a leading dermatology journal like JEADV devotes an entire issue to a condition like HS, you can rest assured that the dermatology community as a whole is taking HS seriously, very seriously.

Many of us in the patient HS community like to tell ourselves that very few others take our HS seriously (and I used to think like that when feeling sorry for myself). This move by the JEADV does much to shatter that illusion, as does the huge increase in HS research outputs in recent years, which I have posted about most recently here.

While a lot of progress has been made with HS in recent years, plenty more remains to be done, especially in raising HS awareness. This most recent issue of JEADV is a step in the right direction in helping to raise HS awareness among dermatologists and other medical professionals with interests in dermatology, and is yet another reason to be optimistic about the future for HS.

 

References:

Lynch, P.J. (1994) ‘Dermatology‘ (House Office Series), Williams & Wilkins, Philadelphia, PA.

Serge, J.A. (2006) ‘Epidermal barrier formation and recovery in skin disorders,’ J Clin Invest., 116, 1150–1158, [online], available at: doi: 10.1172/JCI28521, [accessed 29 Sep 2019].