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Living with/Caring for Someone Who Has HS? Be Their Advocate.

Giusi Pintori

Translation by Angela Ruggiero

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.

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.

HS Stories: The UK

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Continuing on this series of HS patient stories, this post features some testimonies from the UK (comprising England, Scotland, Northern Ireland, and Wales).

The first two HS patient stories below come from the British Skin Foundation. They have done tremendous work highlighting HS among the medical profession and the general public. They have a HS section on their site containing up-to-date disease information written in plain language.

  • From Belfast in Northern Ireland, Cathryn opens up about her HS experiences in this post as part of the international 2019 HS Awareness Week (usually happens around the first week of June).

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  •  Bethan relates the good, the bad, and the ugly aspects of living with HS in this post from April 2020.

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  •  In this short (2 minutes, 40 seconds) video diary, Tara describes her experiences of HS.

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Four patient stories from the UK; four unique experiences but with many unifying themes between them, and with other HS patient stories from Croatia and Ireland.

 

HS Stories: Ireland

In a recent post, I mentioned that if you want to learn about an illness, listening to a patient is one effective way of doing so. A friend who is currently in medical school tells me that she learns as much from the patients who regularly come to talk with them than reading about the relevant disease information in books, online, in papers, and so on. We are far more likely to recall information that came from a person than an inanimate source.

In this spirit, I plan on introducing you to the many, many faces and stories of HS. While each HS story is unique, you will learn about the many common experiences among HS patients.

In the first of these, I share stories from four HS patients from Ireland. Three females and one male share their experiences – most studies from Western countries indicate that there are typically ~ 3:1 females:males in any HS population.

Ireland Blank Mapwith names

  • Read Caroline’s story here:

Caroline

 

  • Nicola’s experience with HS is here.

Nikki

  • Suzanne describes her journey here.

Suzanne

I am fortunate to have been involved in some HS advocacy projects around Ireland with Suzanne, who truly is an inspiration. Since the above story was published a few years ago, Suzanne has been very busy realising much of what she outlined above. Read more about what she has been doing since here.

 

 

These patient stories are hosted on the Irish Skin Foundation charity site. The good people of this charity have been great friends to the HS community in Ireland over the years, working hard with and for us to raise HS awareness among the public, medical community, and beyond. They have initiated and facilitated many great projects for our benefit over the years, and have been very helpful and supportive to us. I think it important to acknowledge this. After all, we all need some help from time to time.

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 in Croatia

Croatia

No matter where you go, the HS story remains more or less the same. Similar patient experiences, and physical and emotional hurt countered by tremendous optimism, hope, and courage.

I recently mentioned HS to a friend of mine, from Croatia, who works in healthcare in Ireland. When thinking about how best to inform her about HS, I could have referred her to a book or to the many HS websites and other online resources that abound. However, this Croatian friend cares deeply about people, and in her work deals with patients all the time. I figured a few minutes of HS patient testimonials might allow her to understand more about HS than hours reading leaflets, textbooks, or similar resources. A brief search revealed some Croatian HS patient testimonial videos from Ljiljana and Miroslav, below. I thought that my Croatian friend may gain a deeper understanding of HS by listening/watching to compatriots of hers, as she would recognise and pick up on any language and cultural subtleties and nuances present.

  • Ljiljana’s story (2:51 minutes):

 

  • Miroslav’s story (3:47 minutes):

 

A few things struck about Miroslav’s and Ljiljana’s stories:

  • The diagnostic delays
  • Multiple surgical procedures
  • The isolation, loneliness, and work disability
  • The bravery, hope, and optimism

I have posted previously about HS diagnostic delays, (for e.g., here and here), and it is worth repeating that such delays can have terrible consequence for patients, carers, treating healthcare workers, healthcare systems, and society at large. This is a pity as it avoidable, for diagnosing HS is simple and quick, if you a) are aware of HS, and b) know what to look for (therein lay the problems).

In his video story, Miroslav mentions 21 surgeries for his HS to date. Many HS patients will also have multiple experiences of what the late Philip Roth described as “the concrete violence of surgery“. Some of the commonly used HS surgical procedures are described here, here, and here. Like Miroslav and many others, I have had many (unsuccessful) surgical procedures with many different surgeons. I gave up counting many years ago. Fortunately, my most recent plastic surgeon and I have a 100% success rate so far (six operations on different sites), and I have not had to visit him in years.

Ljiljana and Miroslav also directly mention or allude to the isolation, loneliness, and unemployment due to their HS, common themes among many, as outlined in the recent HS Global VOICE study involving > 1000 patients from four continents. The Global VOICE study found ~ 15% of the HS population were registered as disabled. However, Miroslav mentions that HS is not formally recognised as a disability in Croatia. It’s the same here in Ireland and I wonder how many others with severe HS slip through the cracks of the welfare systems where they live? What is the true disability level in the HS population?

In both HS testimonial videos, the mental hurt is apparent and raw emotions are not far away from the surface. I found them to be very poignant poems fuelled by frustration and hurt. Both Ljiljana and Miroslav displayed remarkable bravery in recounting their HS tales in this manner and doing so will help many others in Croatia, and beyond. Their courage, sense of hope for the future (and there are good reasons to be hopeful about the future of HS, as posted here and here), and undeniable optimism are inspiring. These too are common traits among many HS patients, or at least many of those I have had the pleasure of meeting in person or online. We don’t have a choice but to adopt such attitudes (the alternative is unthinkable).

 

O sati sumnje, sati bola

O sati sumnje, sati bola,
Ko stvara, taj vas kleti neće
Jer radosti su male svijeće,
A iz vas raste aureola.

Slabašnu djecu radost radja,
I njezin porod brzo gine,
A pjesme, rasplamsane bolom,
Gore ko svjetla za daljine.

 

O Hours of Doubt, Hours of Pain

O hours of doubt, hours of pain
One who creates will never curse you
For your joys are little candles,
And your outcome is the aureole.

Weak children are born by joy,
And its offspring will perish quickly,
But poems fired by pain,
Burn like lights in the distance.

 

by

Dobriša Cesarić (1902–1980)

(Translations by Antun Nizeteo and G. Marvin Tatum, (Journal of Croatian Studies, XX, 1979, – Annual Review of the Croatian Academy of America, Inc. New York, N.Y.))

 

Poem Source

HS Patients Can Lead the Way with Social Distancing and Self-Isolation

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Time for the HS patient to emerge from the shadows and show some leadership. We can help others right now.

Until a few weeks ago, terms such as “self-isolation” and “social distancing” were unknown to most people, but have now become commonplace around the world. For the typical HS patient, while we may not have heard of such new terms, the concepts and practices of self-isolation and social distancing are all too familiar.

I have been self-isolating and socially distancing for most of my adult life. From my experience of interacting with other HS patients in person and on social media, many report the same. There is a substantial body of evidence research to back up  (Esmann and Jemec, 2010; Kouris et al., 2016; Kirby et al., 2017). Many HS patients isolate and distance themselves from others to avoid the stigmatisation, shame, and embarrassment that come with the foul-smelling discharge and staining of clothing that are part and parcel of this condition.

Many people are struggling to adapt to the new reality imposed through lockdowns. Among these will be your family, friends, loved ones, colleagues, and so on. I urge all HS patients with suitable and relevant experience to reach out and assist those close to you and beyond. Show them how to cope with being alone, what you can do to use this time constructively, and how you have managed to adapt. Some useful tips to refresh your memories and point you in the right direction can be found here, here, and here.

As reported recently on Twitter (Palikh 2020):

This virus has a very big ego; he will not come into your house unless you go out and invite him in.

 

If we do step up and help show the way, we can do our bit to help prevent the horror being witnessed around the globe.

 

Strange days indeed….

 

References:

Esmann, S. and Jemec, G.B. (2010) ‘Psychosocial impact of hidradenitis suppurativa: a qualitative study’, Acta Derm Venereol., 91(3), 328–332; OPEN ACCESS [online], available at doi: 10.2340/00015555-1082 [accessed 31 Mar 2020].

Kirby, J.S., Sisic, M., and Tan,. J (2016) ‘Exploring coping strategies for patients with hidradenitis suppurativa’, JAMA Dermatol., 152(10), 1166–1167; OPEN ACCESS, [online], available at doi: 10.1001/jamadermatol.2016.1942 [accessed 31 Mar 2020].

Kouris, A., Platsidaki, E., Christodoulou, C., Efstathiou, V., Dessinioti, C., Tzanetakou, V., Korkoliakou, P., Zisimou, C., Antoniou, C. and Kontochristopoulus, G. (2016) ‘Quality of life and psychosocial implications in patients with hidradenitis suppurativa’, Dermatol., 232(6), 687691; [online], available at doi: 10.1159/000453355 [accessed 31 Mar 2020].

Palikh, G. (@DoctorPalikh) (2020) ‘Just loved this statement from the AIIMs doctor on NDTV…..”This virus has a very big ego, he will not come into your house unless you go out and invite it in”‘, Mar 22 2020, available: https://twitter.com/search?l=&q=ego%20from%3Adoctorpalikh&src=typd; [accessed 31 Mar 2020].

 

 

 

HS: Viewer Discretion is Advised

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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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HS-Inspired Art: “The Wild Weeds”

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It would be possible to describe everything scientifically, but it would make no sense; it would be without meaning, as if you described a Beethoven symphony as a variation of wave pressure.

I recently read The Wild Weeds, a wonderful collection of poems from Belfast-based artist, Cathryn Caulfield, who has HS. The collection is not about HS per se, but there are references to HS and living through the HS experience obviously inspired much of the work. This compilation struck many chords in me, and it is a collection I have been dipping in and out of since. I suspect I will continue to do so for a long time yet.

The last time I wrote about poetry and it’s meaning, I was at secondary school. Fear not, I won’t resume just yet. There are many inspirational quotes from some great minds describing the relevance of art and why it is so important to us all. They are far better qualified to comment than I.

 

The aim of art is to represent not the outward appearance of things, but their inward significance.

― Aristotle