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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.

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”
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 Awareness Week 2019

Today, Monday 03 June, marks the beginning of HS Awareness Week 2019 which runs through 09 June. It does exactly as the name suggests: it is an effort by the international HS community i.e., those living with HS, their friends, families, healthcare professionals and others, to try and raise awareness of HS.

Making both the general public and the medical community aware of HS is critically important. Many of those living with the condition delay seeking professional help due to shame, embarrassment, and other factors. Due to the lack of HS awareness within the medical community, it can take as many as five different physicians, seen over seventeen separate visits, up to eight years to diagnose HS. The patient delay in seeking professional help coupled with the lack of awareness among healthcare professionals can lead to disastrous consequences for patient well-being. This needs to change and through initiatives such as HS Awareness Week this change can be achieved.

If you have HS or know someone who has it, talk openly about how HS impacts you or your loved one with your friends, family, and others. In my experience, talking openly about HS can be very beneficial and cathartic. If you are reluctant to do so in person, consider going online and using the many social platforms available to help spread the message. Similarly, discuss your HS with those charged with looking after your health. There are many useful resources you can freely download, such as this HS information booklet from the Irish Skin Foundation charity, which you can distribute among your network and/or drop off a few copies to your physician’s clinic.

I recently posted about the Jackson Gillies effect, where a brave young man with HS spoke openly about living with HS on primetime tv in the US and the enormous effect this has had on HS awareness. Unfortunately, such opportunities and platforms to spread the HS message are rare, so the onus is on those of us with HS to use opportunities such as HS Awareness Week 2019 to make people more aware of HS. We owe it to our ourselves and to the many as yet undiagnosed patients to make as many people as possible aware about what it is like living with HS.

 

HS and Isolation

No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.

– John Donne, No Man Is An Island

I recently wrote a post about researchers investigating the links between HS and loneliness. Further research has probed the links between HS and isolation and in this post I look at this.

Isolation is often used in association with loneliness, and some use the term interchangeably, but there is a distinct difference. People can be isolated and not feel lonely; at the same time, people can be in the company of others, but feel lonely. Loneliness is a subjective term, something that a person feels and reflects the quality of a person’s relationships while isolation is an objective term reflecting the quantity of social contacts a person has.

Given that HS primarily affects intimate body regions and can disfigure the body, can have negative impacts on body image, can cause debilitating physical pain, work disability, and can negatively impact mental health (by being linked to depression and anxiety), researchers have begun examining if those with HS are socially isolated by having the disease. So just what does the research say about HS and isolation?

Esmann and Jemec (2011) were among the first to examine this and in interviews with 12 HS patients (a small number of participants as far as studies go), they concluded that having HS promotes social isolation due to the fear the HS patient has of stigmatisation, the latter related to fears of revealing the normally hidden HS scars and fears about involuntary release of the foul smell from the HS lesions many of those with HS experience.

In an exploratory study of coping strategies used by HS patients, Kirby et al. (2016) conducted interviews with 21 patients and found that social isolation was used as a means of coping with having HS. The authors categorised this as a “negative coping strategy”,  in contrast to “positive coping strategies” such as use of humour and social supports i.e., relying on family, friends, and so on, for help.

Kouris et al. (2016) assessed isolation in 94 HS patients and compared the results to 94 control patients (i.e., those without HS). They found that those with HS had statistically significant higher social isolation scores than the controls. Furthermore, these scores were linked to what HS Hurley stage the patients were at. Kouris and colleagues conclude that social isolation in HS patients is compounded by the fear patients have about reactions to the smell from discharging lesions. Furthermore, HS patients are likely to cancel social activities such as going out in public and sporting activities, leading to further social isolation. The researchers advocate psychosocial support measures for those with HS, such as patient support groups.

None of this research surprises me and I think the researchers are on the right track: I’ll admit to isolating myself as a means of dealing with my HS. Yes, as a youth I was afraid of how others might react to lesions and scars, so I avoided situations where this may be an issue, e.g., participating in team sports. With age and experience comes wisdom and nowadays, in my mid-forties, I regularly go swimming in a public pool and no longer care much about what others may think in that regard. People can accept me or not for what I am – no big deal either way. For a long time I was obsessed by how others might react to the bad smell coming from my weeping wounds and I avoided situations where this might be an issue. I gave up on intimate relationships some years ago for fear of being rejected because of my disease and surgical scars. A cop out I admit but that is what I thought best at the time.

Do you use social isolation as a means of dealing with your HS?

Do you use HS support groups to remain connected?

 

 

References:

Esmann, S. and Jemec, G.B. (2011) ‘Psychosocial impact of hidradenitis suppurativa: a qualitative study,’ Acta Derm Venereol., 91, 328–332, [online], available at: doi: 10.2340/00015555-1082, [accessed 19 May 2019].

Kirby, J.S., Sisic, M. and Tan, J. (2016) ‘Exploring coping strategies for patients with hidradenitis suppurativa,’ JAMA Dermatol., 152, 11661167, [online], available at: doi: 10.1001/jamadermatol.2016.1942, [accessed 19 May 2019].

Kouris, A., Platsidaki, E., Christodoulou, C., Efstathiou, V., Dessinioti, C., Tzanetakou, V., Korkoliakou, P., Zisimou, C., Antoniou, C. and Kontochristopoulos, G. (2016) ‘Quality of life and psychosocial implications in patients with hidradenitis suppurativa,’ Dermatol., 232, 687–691, [online], available at: doi: 10.1159/000453355, [accessed 19 May 2019].

HS and Diet

You are what you eat.

– Source unknown

food salad restaurant person
Photo by Stokpic on Pexels.com

A timely and most welcome review of the scientific literature concerning the role of diet in HS has been published in the International Journal of Dermatology (Silfvast-Kaiser et al., 2019). Unfortunately, the review is not open access, meaning you must have a subscription to the journal, or be affiliated with some educational/research facility with access to the journal to access the review paper. It is disappointing that this has happened as the review contains lots of useful and important information that HS patients should be made aware of, information that they could apply to their lives today. I will summarise the key points from this review paper in what follows.

Dr. Annika Silfvast-Kaiser and colleagues from Dallas, Texas have reviewed the scientific and lay literature for possible connections between diet and HS. There is some scientific evidence to back-up claims that maintaining the following dietary regimes can help with HS:

  • Eliminating wheat and brewer’s yeast
  • Maintaining a low glycemic load
  • Avoiding dairy products

Brewer’s yeast is used in beer, wine, and cheese production and is also found in many bakery products, pizza dough, soy sauce, and cakes. The link between HS and wheat and brewer’s yeast stems from a single scientific report (Cannistra et al., 2013). This study involved just 12 patients (a small number for scientific studies), and all patients showed alimentary intolerance of brewer’s yeast. The 12 HS patients went on a wheat- and brewer’s yeast-free diet for 12 months following surgery to remove HS lesions and were followed over time. Skin lesions regressed and all 12 patients reported an increased quality of life. As soon as the patients consumed products containing wheat or brewer’s yeast, their HS recurred. Notably, there were not any control groups in this study.

Glycemic load is a measure that factors in the quality and quantity of carbohydrates in a portion of food and how quickly they can raise blood glucose levels. A low glycemic load diet has also been reported to help with HS (Margesson and Danby, 2014).

Dairy-free diets have also been examined as possible influences on HS (Danby 2015). In this study, most (83%) of the 47 HS patients who stuck to a dairy-free diet showed various degrees of improvement in their HS. No patient experienced worsening of the disease compared to the control population not on a dairy-free diet.

In addition to the aforementioned elimination diets, there are claims that some dietary supplements can help with HS, as follows:

  • Turmeric
  • Vitamin D
  • Zinc
  • Levigon®

Turmeric is a spice widely used in Asian cuisine that has well-established anti-inflammatory properties. Despite there being much anecdotal evidence of its beneficial effects in HS, there are no scientific studies investigating turmeric in HS.

Vitamin D deficiency has been reported in HS patients (Kelly et al., 2014; Guillet et al., 2015) and therefore dietary supplementation with vitamin D has been considered as an option to help HS. Guillet et al. (2014) found a correlation between vitamin D deficiency and HS severity (as measured using the Hurley staging system) in a study of 22 HS patients. After supplementation with vitamin D, many of these (63%) HS patients reported a decrease in disease activity after 6 months.

The role of zinc in HS has been explored in a few studies. Poveda et al. (2018) analysed serum zinc levels in 122 moderate to severe HS patients compared to 122 controls and found that low zinc levels were more prevalent in HS patients than in the controls. Zinc gluconate supplementation has been used in a single study involving 22 HS patients, of whom 14 showed partial remission and the remaining 8 patients had complete remission over a 2-year period (Brocard et al., 2007). Another small study involving 12 HS patients showed that zinc gluconate supplementation helped reduce the levels of some biological markers associated with disease activity (Dréno et al., 2012).

Levigon is a dietary supplement containing magnesium, folic acid, and the sugar myo-inositol. In a study by Donnarumma et al. (2018) involving 20 HS patients, those receiving Levigon supplementation showed increased efficacy of concomitant HS therapies, along with an improved metabolic profile when compared to those not receiving supplementation.

It is apparent from this review paper by Silfvast-Kaiser et al. (2019) that research to date has only skimmed the surface of possible links between HS and diet. Some interesting connections have emerged that require further exploration.

Have you found that certain foods trigger your HS?

Does avoidance of certain foods help your HS?

 

References:

Brocard, A., Knol, A.C., Khammari, A. and Dréno, B. (2007) ‘Hidradenitis
suppurativa and zinc: a new therapeutic approach. A pilot study, Dermatol., 214, 325–327[online], available at: doi: 10.1159/000100883, [accessed 05 May 2019].

Cannistra, C., Finocchi, V., Trivisonno, A. and Tambasco, D. (2013) ‘New perspectives in the treatment of hidradenitis suppurativa: surgery and brewer’s yeast–exclusion diet’, Surgery, 154, 1126–1130, [online], available at: doi: 10.1016/j.surg.2013.04.018 [accessed 05 May 2019].

Danby, F.W. (2015) ‘Diet in the prevention of hidradenitis suppurativa
(acne inversa)’, J Am Acad Dermatol., 73: S52–S54, [online], available at: doi:  10.1016/j.jaad.2015.07.042, [accessed 05 May 2019].

Donnarumma, M., Marasca, C., Palma, M., Vastarella, M., Annunziata, M.C. and Fabbrocini, G. (2018) ‘An oral supplementation based on myo-inositol, folic acid and liposomal magnesium may act synergistically with antibiotic therapy and can improve metabolic profile in patients affected by Hidradenitis Suppurativa: our experience,’ G Ital Dermatol Venereol., [online], available at: doi: 10.23736/S0392-0488.18.06012-1, [accessed 05 May 2019].

Dréno, B., Khammari, A., Brocard, A., Moyse, D., Blouin, E., Guillet, G., Léonard, F. and Knol, A.C. (2012) ‘Hidradenitis suppurativa: the role of deficient cutaneous innate immunity’, Arch Dermatol., 148, 182–186, [online], available at: doi: 10.1001/archdermatol.2011.315, [accessed 05 May 2019].

Guillet, A., Brocard, A., Bach Ngohou, K., Graveline, N., Leloup, A.G., Ali, D., Nguyen, J.M., Loirat, M.J., Chevalier, C., Khammari, A. and Dréno, B. (2015) ‘Verneuil’s disease,
innate immunity and vitamin D: a pilot study’, J Eur Acad Dermatol Venereol., 29, 1347–1353, [online], available at: doi: 10.1111/jdv.12857, [accessed 05 May 2019].

Kelly, G., Sweeney, C.M., Fitzgerald, R., O’Keane, M.P., Kilbane, M., Lally, A., Tobin, A.M., McKenna, M.J. and Kirby, B. (2014) ‘Vitamin D status in hidradenitis suppurativa’, Br J Dermatol., 170, 13791380, [online], available at: doi:10.1111/bjd.12900, [accessed 05 May 2019].

Margesson, L.J. and Danby, F.W. (2014) ‘Hidradenitis suppurativa’, Best Pract
Res Clin Obstet Gynaecol., 28, 1013–1027, [online], available at: doi: 10.1016/j.bpobgyn.2014.07.012, [accessed 05 May 2019].

Poveda, I., Vilarrasa, E., Martorell, A., García-Martínez, F.J., Segura, J.M., Hispán, P., Sánchez-Payá, J., Álvarez, P.J., González, I. and Pascual, J.C. (2018) ‘Serum zinc levels in hidradenitis suppurativa: a case-control study’, Am J Clin Dermatol., 19, 771–777, [online], available at doi: 10.1007/s40257-018-0374-5, [accessed 05 May 2019].

Silfvast-Kaiser, A., Youssef, R. and Paek, S.Y. (2019) ‘Diet in hidradenitis suppurativa: a review of published and lay literature’, Int J Dermatol., [online], available at:  doi:10.1111/ijd.14465, [accessed 05 May 2019].

 

 

HS Target Sites

The good news is that most HS experts are in agreement on one thing — HS begins with blockage of the hair follicle, those structures on the skin’s surface from which hair grows and into which the sebaceous (oil) glands open.

hair follicle3

It is not known what causes the initial blockage (occlusion) although several theories are being explored. This blockage is thought to initiate a series of events that cause the filling up and enlargement (dilation) of the follicle with fluid and debris from the follicle, and eventually leading to the rupture of the follicle and release of the debris into the surrounding tissue. Repeated cycles of this can lead to the formation of tunnels (tracts) between follicles and the surface of the skin.

HS pathogenesis

Image from Saunte and Jemec (2017)

 

The bad news is that for most people, hair follicles are found on almost all areas of the skin: the only exceptions being the soles of the feet and the palms of the hands. This means that HS can strike just about anywhere on the body; however, HS typically affects certain areas of the body, as illustrated:

HSbodysites

The areas most commonly affected include: the armpits (axillae), under and on the breasts (in females), the groin and the thighs (inguinal area), the genitalia, the buttocks, and the perineum (the region between the anus and the vulva or scrotum). The jury is still undecided on exactly why HS primarily affects these areas, but it is notable that all involve skin-on-skin contact.

In my 30+ years’ of living with this awful condition, I have been affected in most of these areas at some point or other. While some things, such as the pain, are a constant, each affected area presents its own set of challenges in the simple and everyday things that most people may take for granted. For instance, having HS in the backside area can make the very act of sitting down problematic. When sitting we naturally shift position every few minutes but with HS trying to find and maintain a comfortable position can be tough. Taking a trip in a car or bus or similar can be very challenging. When I had HS on my inner thighs, even struggling to walk for just a few minutes would leave my thighs covered in blood and pus, and the showers I’d take immediately after were reminiscent of that infamous shower scene in Alfred Hitchcock’s Psycho:

 

Having HS on the genitalia is no laughing matter. I previously posted about how having HS in the intimate regions and elsewhere can result in an impaired body image. Furthermore, genital involvement of HS can profoundly impact one’s ability to enjoy sex, as mentioned here and here. It is as if someone is playing a sick and cruel joke with us. Personally, perhaps the most physically challenging time was when I had HS in the armpits. It made doing the simplest of tasks extremely difficult. For example, getting dressed/undressed could be hell, when trying to raise my arms about shoulder height to take off/put on a t-shirt or pullover could reduce me to tears. I distinctly recall struggling to cook, to clean, and to brush my teeth, as the motion of the arms could cause pain in the armpits. At work, I knew I had reached a low point when clicking a mouse on a computer could cause tremendous pain and discomfort.

Thankfully, I haven’t yet been affected elsewhere, but there are numerous reports in the medical literature of people also developing HS in atypical regions, including the abdomen, chest, behind the ears, the eyelids, neck, scalp, and face, to name just some. I am fortunate: my HS has thus far just affected me in areas not readily visible to the public, but many others with HS are not so fortunate. Jackson Gillies, the talented young musician and HS advocate I mentioned here, is visibly affected by HS on his neck.

In what regions of the body have you been affected by HS?

What sorts of challenges have the affected areas presented to you?

 

Reference:

Saunte, D.M. and Jemec, G.B.E. (2017) ‘Hidradenitis suppurativa: Advances in diagnosis and treatment’, JAMA, 318(20), 2019–2032, [online], available at: doi:10.1001/jama.2017.16691, [accessed 27 Apr 2019].

 

HS and Work

Love and work …. work and love, that’s all there is.

– Sigmund Freud

The older I get, the more I agree with this Freud quote. It is, in my opinion, the very essence of why we are — to love and to work. I believe that the ability to do both should be available to everyone. Yet these are inaccessible for many HS patients, with work in particular beyond reach. In this post, I look at some research that focusses on the effects of HS on work.

HS typically affects people in their late teens to the 40s i.e., during some of the most productive work years. Due to the chronic physical pain associated with HS, working in a physically demanding job can be beyond some people with HS. In addition, HS can lead to mental health problems such as anxiety and depression, further limiting the work roles available to many. HS is therefore associated with work disability.

Some research has examined just how much of an impact HS can have on the HS patient’s ability to work. Dr. Peter Theut Riis and colleagues looked at the unemployment rate in a group of 383 HS patients in Denmark and report the rate was approximately four times higher for those with HS (~25% unemployment rate), than in the background  population with an unemployment rate of 6% (Theut Riis et al., 2017). A similarly high rate of unemployment (21%) was reported in a study on 150 HS patients in Ireland, compared with a 6% unemployment rate in the general Irish population (Delany et al., 2018). In this study, a further ~10% were out of work due to temporary or permanent illness disability [the authors do not specify if illness disability was due to HS or was HS related]. HS can also impact those in employment with 50%–58% of employed HS patients missing work due to their HS; the mean number of HS-related sick days was 14.2– 33.6 workdays per year (Matusiak et al., 2010; Kluger et al., 2017). Matusiak and colleagues conducted a 2-year follow-up of HS patients in their study and found that 10% of the employed group lost their jobs due to an inability to perform their work duties properly and frequent absences from work. A further 23% reported that they had HS-related obstacles with promotion or advancement.

My own experiences reflect many of these research findings. About 10 years ago, I was in a very good job and was on the verge of a promotion to a senior role. However, over time HS took over and I was increasingly absent from work due to HS surgery and having to attend clinics for regular dressings of my HS surgery wounds. The job was very demanding, time-consuming, and stressful and having HS certainly wasn’t helping me fulfill my duties. Something had to give and the end result was me losing my job. While trying to find new employment, my HS worsened and I had many more HS surgeries which, together with the global economic recession of late 2008, made trying to find new work all the more difficult. I had reached a stage where performing the work I was trained to do became extremely difficult due to HS — I knew I was in trouble the day I found it excruciatingly painful to click a computer mouse! I became dependent (financially and otherwise) on help from family and was also reliant on the state for a time. This was not part of my grand plan and certainly wasn’t the reason I had worked so hard in my youth and early adulthood to get a good education and career. Over time, surgeries and medications began to make a difference and I set about re-training, pursuing further education, and developing new skills which enabled me to eventually find new employment in a job which allows me to work from home, if needs be.

I appreciate how fortunate I am to be in a position to relate a positive outcome to my HS story so far — there are many with HS who are struggling physically, mentally, socially, and financially, with the latter being exacerbated by the inability to find or maintain regular work suited to their abilities.

 

Digging

Seamus Heaney (1939–2013)

Between my finger and my thumb
The squat pen rests; snug as a gun.

Under my window, a clean rasping sound
When the spade sinks into gravelly ground:
My father, digging. I look down

Till his straining rump among the flowerbeds
Bends low, comes up twenty years away
Stooping in rhythm through potato drills
Where he was digging.

The coarse boot nestled on the lug, the shaft
Against the inside knee was levered firmly.
He rooted out tall tops, buried the bright edge deep
To scatter new potatoes that we picked,
Loving their cool hardness in our hands.

By God, the old man could handle a spade.
Just like his old man.

My grandfather cut more turf in a day
Than any other man on Toner’s bog.
Once I carried him milk in a bottle
Corked sloppily with paper. He straightened up
To drink it, then fell to right away
Nicking and slicing neatly, heaving sods
Over his shoulder, going down and down
For the good turf. Digging.

The cold smell of potato mould, the squelch and slap
Of soggy peat, the curt cuts of an edge
Through living roots awaken in my head.
But I’ve no spade to follow men like them.

Between my finger and my thumb
The squat pen rests.
I’ll dig with it.

 

References:

Delany, E., Gormley, G., Hughes, R., McCarthy, S., Kirthi, S., Markham, T., Tobin, A.-M., Murphy, M. and Kirby, B. (2018) ‘A cross-sectional epidemiological study of hidradenitis suppurativa in an Irish population (SHIP)’, JEADV, 32, 467–473, [online], available at: doi: 10.1111/jdv.14686, [accessed 19 Apr 2019].

Kluger, N., Ranta, M. and Serlachius, M. (2017) ‘The burden of hidradenitis suppurativa in a cohort of patients in southern Finland: a pilot study’, Skin Appendage Disord., 3:20–27, [online], available at: doi: 10.1159/000455236, [accessed 19 Apr 2019].

Matusiak, L., Bieniek, A. and Szepietowski, J.C. (2010) ‘Hidradenitis suppurativa
markedly decreases quality of life and professional activity’, J Am Acad Dermatol., 62:e701 [online], available at: doi: 10.1016/j.jaad.2009.09.021, [accessed 19 Apr 2019].

Theut Riis, P., Thorlacius.. L, Knudsen List, E. and Jemec, G.B.E. (2017) ‘A pilot study of unemployment in patients with hidradenitis suppurativa in Denmark’, Br J Dermatol., 176, 1083–1085, [online], available at: doi: 10.1111/bjd.14922, [accessed 19 Apr 2019].

Highlighting HS

Something quite remarkable happened recently, something that will have lasting consequences for the HS community.

A young man who has HS spoke openly about his struggles with HS on primetime television in the US. This happened on the American Idol show, which commands huge ratings in the US and around the world. The young man, Jackson Gillies, got through to the final rounds of the popular competition and could easily have chosen his slot to talk about various other aspects of his life, but instead Jackson elected to focus on his life with HS. You can watch the ~ 7 minutes clip here:

Why is this significant? One of the biggest challenges for HS patients is the delay in getting a HS diagnosis, which takes on average over 7 years (Saunte et al., 2015), and can involve seeing five different physicians over 17 separate visits. This delay can, and does for many, have profound consequences on patient well-being, and increases the burden on the patient. One of the reasons why it can take so long is down to the fact that many physicians are simply unaware of the existence of HS, and as von der Werth (2001) said:

To diagnose hidradenitis one first and foremost has to think of it.

The frustrating thing about diagnosis is that once a physician knows what to look for, making the HS diagnosis is a simple and easy procedure that can take less than 2 minutes.

Jackson’s few minutes on primetime US television has raised HS awareness among the general public and crucially, also among the medical community. This few minutes will have done more for HS awareness than the many well-intentioned, but relatively ineffective traditional print and other media campaigns undertaken in recent years.

How much of an impact did Jackson’s television appearance make? In the short-term, Google Trends reveals that online interest in HS in the US approximately doubled at the time of Jackson’s appearance on American Idol, as illustrated here:

Jackson-Amercian Idol_3

The long-term effects of Jackson’s American Idol appearance will be revealed in time, but I strongly suspect they will be significant also. Jackson’s story will have resonated with many as yet undiagnosed HS patients and will help them go seek the medical help they need. His story will also have registered with medical professionals who may have previously been unaware of HS, but who are now are better informed.

This is not the first time this talented young musician has availed of opportunities to bring HS into the public domain. I first became aware of Jackson a few years ago when I saw a TEDx talk he gave about his life with HS. You can view his ~16 minutes inspiring talk here:

 

The more I read and see of this brave young man, the more impressed with him I become. For instance, for a time he was unable to walk due to his HS, so he used the time productively and learned to play the guitar, a great example of how to turn a negative into a positive. As an aside, he regularly appears in my news feed and I see that Jackson frequently uses his musical talents to do fundraising concerts for many different charities and other worthy causes.

Each of us could take a leaf out of Jackson’s book and use every opportunity that presents itself to speak, talk, write, etc. about our HS story and help raise awareness of this awful condition. We owe it to ourselves and to the many undiagnosed people enduring HS in silence.

 

References:

Saunte, D.M., Boer, J., Stratigos, A., Szepietowski, J.C., Hamzavi, I., Kim, K.H., Zarchi, K., Antoniou, C., Matusiak, L., Lim, H.W., Williams, M., Kwon, H.H., Gurer, M.A., Mammadova, F., Kaminsky, A, Prens, E., van der Zee, H.H., Bettoli, V., Zauli, S., Hafner, J., Lauchli, S., Frnech, L.E., Riad, H., El-Domyati, M., Abdel-Wahab H., Kirby, B., Kelly, G., Calderon, P., del MArmol, V., Benhadou, F., Reviz, J., Zouboulis, C.C., Karagiannidis, I, Sartorius, K., Hagstromer, L., McMeniman, E., Ong, N., Dolenc-Vojic, M., Mokos, Z.B., Borradori, L., Hunger, R.E., Sladden, C., Scheinfeld, N., Moffah, N., Emtemstam, L., Lapins, J., Doss, N., Kurokawwa, I. and Jemec, G.B. (2015) ‘Diagnostic delay in hidradenitis suppurativa is a global problem’, British Journal of Dermatology, 173(6), 1546–1549. [online], available at: doi: 10.1111/bjd.14038.

 

von der Werth, J. (2001) ‘Hidradenitis suppurativa’, Dermatol in Prac., 9, 2225.

 

On Loneliness

Throughout my adult life, I have strongly identified with some aspects of Travis Bickle, the character played by Robert De Niro in Taxi Driver, such as the loneliness he describes in this clip.

 

 

 

As a result of my HS, I used to frequently cancel social appointments with friends at the last minute, which was not exactly conducive to maintaining friendships. Understandably over time, these social invitations dried up. Due to multiple disease and surgical scars, my body image has been affected by HS and consequently I have shied away from intimacy with others. For these and other reasons, I have struggled to make connections and develop relations with others and at times feel lonely. I always felt my loneliness was strongly connected to my HS, and there is some scientific research indicating a link between HS and loneliness.

Esmann and Jemec (2011) found that HS promotes isolation due to the fear of stigmatisation experienced by those with HS. This research was done by interviewing 12 HS patients and most of those interviewed said that they felt alone with their HS and were anxious to know if others experienced similar feelings.

Kouris et al. (2016) used the UCLA Loneliness Scale (a commonly used measure of loneliness in the medical literature) to assess loneliness in 94 HS patients and compared the results with 94 healthy controls. They found a significant difference between the loneliness in those with HS than in those without HS. Furthermore, the researchers found that the extent of loneliness in HS patients was significantly linked to the clinical severity of HS (as measured by HS stage).

So why is loneliness significant? In addition to obvious mental and emotional effects, loneliness can also have many negative effects on physical health. For instance, loneliness has been linked to a 50% increase in premature death, increased blood pressure, higher cholesterol levels, depression and if that wasn’t enough, decreases in cognitive abilities and an increased risk of Alzheimer’s disease (Magen 2018).

What can the HS patient do to combat feelings of loneliness? Magen (2018) and Remes (2018) suggest some useful and practical ways to beat loneliness. In this connected world social media enables linking in with others in similar situations and as Esmann and Jemec (2011) report, it is important for many HS patients to know they are not alone in their experiences in enduring the condition. There has been a proliferation of online HS support groups in recent years and while not for everyone, these may be beneficial to some. You could always join a HS support group in your local town/city. If there isn’t one, consider starting one. I have had the good fortune to meet many others with HS and these meetings have been the most therapeutic experiences I have had for my HS. It can be beneficial to talk about HS with others who understand.

Do you feel lonely as a result of your HS? What do you do to tackle these feelings?

 

The Loneliness One Dare Not Sound

Emily Dickenson (1830–1886)

The Loneliness One dare not sound—
And would as soon surmise
As in its Grave go plumbing
To ascertain the size—

The Loneliness whose worst alarm
Is lest itself should see—
And perish from before itself
For just a scrutiny—

The Horror not to be surveyed—
But skirted in the Dark—
With Consciousness suspended—
And Being under Lock—

I fear me this—is Loneliness—
The Maker of the soul
Its Caverns and its Corridors
Illuminate—or seal—

 

 

References:

Esmann, S., and Jemec, G.B.E. (2011) ‘Psychosocial impact of hidradenitis suppurativa: a qualitative study’, Acta Derm Venereol.,91: 328–332, [online], available at: doi: 10.2340/00015555-1082, [accessed 06 Apr 2019].

Kouris, A., Platsidaki, E., Christodoulou, C., Efstathiou, V., Dessinioti, C., Tzanetakou, V., Korkoliakou, P., Zisimou, C., Antoniou, C., and Kontochristopoulos, G. (2016) ‘Quality of life and psychosocial implications in patients with hidradenitis suppurativa’, Dematol., 232:687–691, [online], available at: doi: 10.1159/000453355 [accessed 06 Apr 2019].

Magen, J. (2018) ‘This is why loneliness is bad for your health’, [online], available at: https://www.weforum.org/agenda/2018/02/loneliness-is-bad-for-your-health, [accessed 06 Apr 2019].

Remes, O. (2018) ‘Here’s what we can do to beat loneliness’, [online], available at: https://www.weforum.org/agenda/2018/07/loneliness-is-contagious-and-heres-how-to-beat-it, [accessed 06 Apr 2019].