The BOSD study is the largest such study ever undertaken in Europe. Data was collected from 44,689 adults from 27 European countries, including all countries of the European Union as well as the UK, Norway and Switzerland.
The main objectives of the EADV’s BOSD study were to: – Evaluate the prevalence of #dermatologic or #venereological conditions across Europe – Understand the reasons that people consult a #dermatologist – Assess the impact of #skin diseases on #patients – Understand the journey of skin #disease patients – Learn about the public perception of dermatologists
Part 1 focused on the prevalence of such diseases. Data from Part 1 of this study found that 43% of people in Europe had at least one skin disease over the past 12 months of the study period. These findings were published in 2022 and may be accessed (for free) here.
(Of note, this study estimated that almost 2.7 million people in Europe live with #HidradenitisSuppurativa [HS], and is one of the most common skin diseases affecting the European population).
Among the main findings from the follow-up BOSD study, involving almost 20,000 Europeans are:
– Most people (almost nine out of ten) people consider their disease to be embarrassing. – Anxiety and depression were frequently reported by people with all the diseases. – Quality of life was particularly impaired in people with HS; in addition, #stigmatization levels in people with HS (#pwHS) were comparable to those reported in other visible skin conditions such as #acne and #vitiligo.
Subsequently, a delegation from EADV visited the European Parliament to present a ‘Call to Action‘ on #chronic#inflammatory#skin#disease based on their findings from the BOSD study.
This important and welcome Call to Action may be accessed here.
People with hidradenitis suppurativa (HS) often complain on Facebook support groups of the difficulty of talking to their family members about the disease, but also of being listened to and, above all, of being understood by their loved ones. They also find relationships difficult in general, particularly in relation to the work or school environment. They need compassion but can hardly find as much as they would like.
The silence, the lack of assistance, and the total absence of medical and disability benefits exacerbate the suffering from the disease. They need to convey their feelings of loneliness, to share their profound state of suffering, but this also means inducing a state of disturbance and suffering in their loved ones.
It is important to give the patient’s family the opportunity to express themselves to feel relieved, to express their upset, their pain, or their faults. We need to help them reconnect with the patient and restore the communication (which is) very often interrupted and get out of the darkness. Even if it’s not their disease, they still must live with it.
The patient groups are administered by the patients themselves, but their spouses, boyfriends, partners, parents, or children also take part. The illness of the loved one is at the centre among the participants and they often feel frustrated, and driven into a “world” they do not know. Most of the time, thinking that their loved ones are not getting proper assistance makes them feel guilty.
Within the family, new problems can arise, which may often cause the desire to run away. On the other hand, the disease can bring people closer, but these are very isolated cases. For example, we had cases of women who had been left by their partners, but also women confined to the house to dedicate themselves completely to assisting their sick loved one. Unfortunately, by reacting in this way, you can forget to live your life.
Those who join the group expect to receive warmth and understanding from other members who are living and suffering from a similar situation. They too want to let out their fears and bitterness. They seek advice on how to deal with this situation; how not to feel guilty, how to hide the upset, how to answer difficult questions, and manage the patient’s mood swings. Problems caused by the disease do not concern family members as much as they affect the patient.
In fact, family members do not ask “technical” questions. The most frequent question is where to go, to whom, and how to resolve the problem definitively. Too often doctors give inaccurate and wrong predictions that compromise the dialogue with the family: “WITH THIS THERAPY YOU WILL BE MUCH BETTER”, OR: “THERE IS NO CURE SO GIVE UP” To improve communication, to eliminate feelings of guilt, to help people in a situation they are not prepared to face, offering support to the family is as important as supporting the patient. Let’s help them to protect their future; without the support of their families, HS patients can’t make it.
I encourage you to do it; not everything depends on us, but we can do a lot. Mothers and fathers, mobilise yourselves, do not remain helpless in the face of all this. Taking care of your children depends a lot on the help they receive at home, but also on strong and constant political activism. Talk to your political representatives, and ask for the possibility of speaking with patient representatives. Be available for this great commitment; the life of your family member depends on this but also yours and that of many other people. It is challenging but it must be done. Thank you.
Giusi Pintori, HS patient representative and project manager of Uniciv.
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.
The 13th Annual European Hidradenitis Suppurativa Foundation Conference (#EHSF2024) happened recently (07th Feb to 09th Feb) in Lyon, France.
Some 700 #HidradenitisSuppurativa (HS) specialists from 51 countries around the globe gathered for this 3-day event to share information and learn from one another. I was fortunate to attend as a patient representative for HS Ireland.
While there were many outstanding events over the 3-days of EHSF2024, some personal highlights included:
The HS Nursing School: this has been a part of EHSF since 2020 and is always a personal favourite. Nurses, especially HS-knowledgeable one, are widely regarded with tremendous affection by many people with HS (#pwHS). They are often viewed as great “go-betweens” by pwHS. Some in authority do not appreciate how much a personable and compassionate approach, which comes naturally to many nurses, is appreciated by pwHS. I had the pleasure of presenting at this year’s Nursing School about #stigma experienced by pwHS.
Medical Treatments for HS; many new treatments for HS are in development and being tested. Clinical trial results were presented from several of these in development; many are showing highly encouraging results.
HS Around the World: another personal favourite where representatives from HS clinics from all over the world share findings
Live Surgery: images were beamed in from an operating theatre where some HS surgeries were performed. I have undergone many such surgeries and it was a revelation to witness the process, to listen to the discussion between the surgeon who was operating and the surgeon co-chairs (who were on stage at the event). In the 2 hours of this event, three people with HS had surgery (an armpit, a groin, and the buttocks). Incredible to witness. Sincere thanks to the pwHS for permitting us to view these and to Dr Philippe Guillem and staff for allowing us into their world.
In between surgeries, several presentations were delivered. One presentation from a young dermatologist from South America was particularly noteworthy. Until ~ 18 months ago, this dermatologist had not performed any HS surgeries. By attending previous EHSF events and from the support of others, he was inspired to do so and was now routinely operating on pwHS. This epitomises what these events are about: people exchanging knowledge and experiences.
Results from the “What If in Suppurative Hidradenitis?” (WISH) study. HS patient associations distributed a questionnaire (in multiple languages) amongst their members asking pwHS if they had a magic wand, what would be their one wish? Some 463 pwHS (mainly from Europe) responded; more on that anon.
The interactive session between healthcare providers (HCPs) and patients on Friday afternoon. Learned much about how experienced HCPs approach situations involving HS and I trust they learned from the many patient contributions too. It was an inspiring discussion that challenged many of my long-held views. I hope that we all learned from one another, which is what these are about. Bravo to the organisers for including this.
The Patient Organization Representatives’ Meeting and Chat Room, a first-of-its-kind session at EHSF in that it was run by pwHS for pWHS; all the patient associations appreciated being allowed to explore common themes in a safe space.
The Suppurative Hidradenitis ARt Emulation (SHARE) Art contest: another inspired element at this year’s event. Carers, pwHS, and HCPs contributed artworks exploring the theme of healing through art. Many of the works on show were emotive. There is much creative talent within the HS community.
Live Surgery:
HS Art:
My Doc and me; The HS Follies
Eruption
The Lady
HS Impact
A class touch on the final day was the interactive art work where painter Alexandre Caillarec / XELA Bottlepainting created a piece together with many of those in attendance at EHSF 2024; everyone working together to create something beautiful. The final result:
Next year’s EHSF takes place in Vilnius, Lithuania from 12th to 14th February, 2025. Hope to see you there!
On first reading this outstanding insight about the experiences of people who have HS from clinical psychologist Dr Laura Howells and colleagues, I felt as if the authors had reached deep into my heart and soul and distilled the essence of what life with HS is like. Since its publication in 2021, I’ve ruminated on its contents and that feeling about seeing into my heart and soul has grown deeper.
The study was a research priority exercise from the James Lind Alliance (JLA) and the authors in the study team comprised a clinical psychologist, dermatologists, and other healthcare providers. Crucially, the study team also involved a HS patient. The JLA Priority Setting Partnerships brings carers, clinicians, and patients together to identify and prioritise unanswered questions or evidence uncertainties that they agree are the most important. Therefore, health research funders are aware of the issues that matter most to the people who need to use the research in their lives.
The team aimed to answer the following: ‘What is the impact of HS and the treatments on people with HS (physical, psychological, financial, social, quality of life)?‘ and to do this searched the available literature on qualitative research relating to peoples’ experiences with HS. They identified a range of issues experienced among people who have HS, broadly categorised into three categories, outlined below:
1. Putting the Brakes on Life
The first main theme identified in this work was that physical, psychological, and social consequences of HS resulted in people missing out on multiple life events. Speak with anybody who has HS and the top three symptoms they struggle with are: pain, pain, and pain. This often unbearable and relentless pain can make even the mundane, everyday tasks unbearable, tasks such as bathing, cleaning, cooking, dressing. It is humbling when you have to ask others to help tie your shoelaces. For many with HS, you can add in foul odour coming from draining wounds. Many try cope by staying at home, avoiding social, work, and other events. Such behaviour ultimately leads to loneliness and isolation. Consequently, life events such as meeting a partner, starting a family, getting on with one’s education and career, and so on, are put on hold. I did this for years, always hoping that the ‘next’ surgery or treatment would see me right. I find myself single in my late 40s wondering what has happened and where has the time gone?
“Last night I dreamt That somebody loved me No hope, no harm Just another false alarm
Last night I felt Real arms around me No hope, no harm Just another false alarm”
Last Night I Dreamt Somebody Loved Me, The Smiths
The Smiths: “Last Night I Dreamt Somebody Loved Me”
2. A Stigmatised Identity
Another theme identified by the authors was that people who have HS try to conceal their HS, visually and verbally, resulting in anticipation and fear of exposure. Many people feel tremendous shame and embarrassment about their HS, going to extreme lengths to hide their HS. Many live in abject fear of being found out. I recall a particular incident when arriving at work one day many years ago. Despite leaving my home just 15 minutes previously and applying lots of bandaging and dressings, a heavily draining wound was already stinking. On arrival at the building where I worked, I got into a lift to ascend to my desk on the second floor. Others got in also and once the lift doors closed, someone commented on the smell. Thankfully, they didn’t pinpoint the smell to me on the short ride (or at least had the courtesy not to say anything) directly to me). From that day on, I avoided the lift, despite having many lesions in/around the groin and often having to spend time in the bathroom cleaning the blood and pus from my thighs and surrounding areas. Every person with HS whom I have spoken with has a similar embarrassing incident or story. We often go to extreme lengths to avoid such, remaining hidden in the shadows for fear of being found out.
Joy Division perform “Shadowplay”
The authors also report that “Social support and psychological acceptance helped people cope. Connecting to others with HS may have a specific role in preserving a positive self-identity.” There are many such HS support groups on social media platforms and elsewhere online. Some support groups meet in person. In my experience, when done right, such groups can be tremendous assets and serve as lifelines for many, countering the isolation and loneliness mentioned above. On the flip side, when not managed effectively, these groups can be toxic environments. More on this topic anon,
The final theme identified and reported by the study team is that people who have HS often experience ‘falling through the cracks’ of healthcare. The well-established HS diagnostic delay (I have posted on this previously, here and here), misdiagnosis, and lack of access to care are common amongst those with HS. In my own case, almost 20 years passed and several other diagnoses received before I first learned about the existence of ‘hidradenitis suppurativa’. I was in a bad state by the time I finally met with someone who was familiar with HS. Obviously, the later one is diagnosed, the chances of progressing to more severe HS increase. During this time, one may receive many inappropriate and ineffective treatments, and passed around the healthcare system. That was certainly my experience and it is distressing to read this is a common experience for people who have HS.
If you have HS, it may be some comfort to read of others experiences in the journey with HS. While each of our experiences are unique, you may benefit from learning about others and their journeys. You may well be surprised about the commonality of much of what we go through, If you care for people who have HS or have any interest in the condition, please read the enlightening and insightful thematic synthesis by Howells and colleagues.
References:
Howells., L., Lancaster, N., McPhee, M., Bundy, C., Ingram, J.R., Leighton, P, Henaghan-Sykes, K., Thomas, K.S., (2021), ‘Thematic synthesis of the experiences of people with hidradenitis suppurativa: a systematic review.’, Br. J. Dermatol., 185(5):921–934. doi: OPEN ACCESS, [online], available at: doi: 10.1111/bjd.20523.
Plain Language Summary of Howells et al. (2021), ‘What is known about the experiences of people with hidradenitis suppurativa?, Br. J. Dermatol., 185(5), Page e185, OPEN ACCESS, [online], available at: https://doi.org/10.1111/bjd.20723
I recently (26/MAY/2022) participated in an interview about living with HS, with my local radio station, Clare FM in Ireland.
The link below contains the brief discussion I had with Alan Morrissey, the host of Morning Focus on Clare FM, about some of the ways in which HS has impacted my life.
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.
Along with another HS patient, I took part in a recent radio interview to discuss HS and the impact it can have on one’s life. The interview was with Anna Geary, host of Supercharged on RTE Radio 1.
This link will take you to the podcast of the show. Fellow HS patient, Dee, and I speak with Anna about our HS from 03:30 to 12:55 minutes in the link. HS dermatologist, Professor Anne-Marie Tobin, also appears on the show. Anna also speaks with a psychotherapist who offers some advice on how to deal with a skin condition. Thanks to Anna and her team for inviting us to discuss this and for highlighting HS to a wide audience.
This event, the 10th Conference of the European Hidradenitis Suppurativa Foundation (EHSF), is happening currently (EHSF2021; 10FEB2021 through 12FEB2021). I was fortunate to attend some of these previous conferences, such as EHSF2020, and it heartening to learn that the event grows from strength to strength, with > 700 delegates registered to attended the 2021 conference (up from > 400 at the 2020 gathering).
I am very happy to learn that patients are being increasingly involved in proceedings, and this year’s event is FREE to register for if you have the condition, albeit with restricted access to proceedings, but some access is better that nought. Discounted rates are also available for nurses, patient representatives, and students. If you wish to register to attend, please click here.
Previously, I have reported on HS-associated pain and highlighted some of the research showing just how much this pain can impact on patients’ lives. The clinical experts recognise the debilitating aspect of pain for many HS patients, and in the nine international HS treatment guidelines published since 2015 (open access reviews here and here), all acknowledge the importance of pain and advocate that treating physicians address this in the course of treatment. Yet to date, little-to-no HS-specific pain recommendations, products, or strategies have been developed. Consequently, patients are (and have been) doing this themselves. A revealing recent study from researchers in Denmark looks at some of the methods used by patients to address their pain.
Astrid-Helene Ravn Jørgensen and colleagues surveyed 134 patients attending a clinic at the Department of Dermatology, Bispebjerg Hospital, Copenhagen, Denmark. Patients were asked to complete a multiple choice seven-item questionnaire on methods they used to self-drain HS lesions, and if so, how they achieved this i.e., by applying pressure using their fingers, needles, or other means (e.g., a knife). Participants were asked to report on how well (or not) these methods worked, and if there were any subsequent symptoms (such as bleeding, infections, malaise). Respondents were also asked to comment on other methods they used for pain relief. Finally, patients were also asked about self-harm.
The researchers found that most (approximately four out of five) of the patients had attempted to relieve the pain themselves by applying pressure. Approximately three out of every four used their fingers to drain their lesions, around one in three had used a needle, while about one in fifteen used a knife. Other pain-relief methods reported by the patients included using painkillers (one in six), showering (one in fifteen), and by applying hot cloths to the affected areas (used by about one in fifty). Not related to pain relief, almost one in nine patients reported self-harm.
Significantly, in their conclusions, the authors remark that self-draining of lesions “may reflect sheer frustration and a pronounced desire to control pain sensation“. The authors of this paper are to be commended for a number of things:
Highlighting this important issue
Attempting to measure the extent of the practice in a patient group
Their non-judgemental appraisal of the situation
At the HS conferences I have been fortunate enough to attend, the HS clinical experts have mentioned self-draining of lesions. They (the experts) suggest that people should not do this. The experts argue, reasonably, that as self-draining of lesions are typically done in non-sterile environments, this may lead to infection and/or other complications (some argue that it may promote sinus tract [tunnel] formation). Furthermore, some argue that the lesions will eventually open naturally and advocate holding out till it passes. This latter point is scant consolation to the person who is rendered physically incapacitated by an angry flaring lesion. Some may have physically demanding jobs, and/or infants/toddlers/young children who may need ‘hands-on’ care and attention, and just about all of those with HS will need to cook, clean, dress/undress, and the multiple other daily chores that require some physical activity. What are the options?
Attend the emergency department of your local hospital where you may well need to wait for long periods? Due to the very poor disease awareness, if one is lucky, the attending physician will be familiar with HS and perform an I&D procedure. (with very high recurrence rates)
Attend your dermatologist? (My last ’emergency’ required a 6-week wait to see my dermatologist – this was before COVID-19)
Go see your family doctor, some of whom will refer to you the local hospital/your dermatologist? Otherwise, the doctor may prescribe oral antibiotics which usually take 24-48 hours before having a desired effect (if at all).
Wait it out?
Deal with it yourself?
The situation reminds me of the old approach to heroin addiction i.e., “just say no”, which doesn’t work. Progressive thinkers began to look beyond this ‘no’ rhetoric and realised that people were going to continue injecting heroin anyway. Some went so far as to propose providing sterile syringes and safe environments where people at least could reduce the risk of picking up infections from previously used and contaminated syringes, and so on.
As reported here, research has shown that sizeable proportions of those with HS are using substances of abuse (such as alcohol, cannabis, opioids) to help relieve the pain. Coupled with this important paper from Ravn Jørgensen and colleagues, is it any wonder?
References:
Ravn Jørgensen, A.H., Yao, Y., Thomsen, S.F., and Christian Ring, H. (2020) ‘Self-Reported Pain Alleviating Methods in Patients with Hidradenitis Suppurativa,’ Actas Dermosifiliogr., OPEN ACCESS, [online], available at: DOI: 10.1016/j.ad.2020.08.011
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