Featured

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.

A Slice of Life with HS

At the summit of Pico Cerler, Spain, 25/MAY/2022

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.

https://www.clare.fm/podcasts/clare-man-shines-light-hs-condition/

Continue reading “A Slice of Life with HS”

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.

Let’s Talk About Hidradenitis Suppurativa

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.

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.

Tenth Conference of the European Hidradenitis Suppurativa Foundation

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.

DIY HS Pain Relief

Photo by Deden Dicky Ramdhani from Pexels

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

HS Stories: The UK

uk-map

 

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).

UK_Cathryn

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

UK_Bethan

UK_Elise

 

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

UK_Tara

 

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.

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

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.