Is Hidradenitis Suppurativa (HS) A Rare Disease?

Andre The Giant Had A Posse and a Rare Disease. R.I.P.

Andre The Giant Had A Posse and a Rare Disease. R.I.P.

 


When I first began my work for Hidradenitis Suppurativa (HS) public awareness back in 2015, it was not clear to me, nor at the time to many patients or even those within industry that HS was not a Rare Disease. 

Although so much has changed over these last short few years, to this day many still believe that HS is a Rare Disease. Misinformation still abounds in patient groups around the world and the population of medical professionals that still have yet to review any current literature from the last five years or so may also hold the same understanding.

Regardless of the ongoing work and critical need for HS public awareness it is these last few short years that the current literature very much speaks to a global consensus that HS prevalence ranges, depending on the region or country in question, anywhere from a 1% to 4% prevalence.

Below I have listed several key historical publications by year (oldest to newest) with quote speaking to my statement above.

(1996-09-10) The prevalence of hidradenitis suppurativa and its potential precursor lesions | “The point prevalence was 4.1% (95% confidence interval [CI] = 3.0-6.0) on the basis of objective findings. The 1-year prevalence of hidradenitis was 1.0% (CI = 0.4-2.2) on the basis of subject recollection only. The patients in the sample on which point prevalence is based were younger than those in the unselected sample of the general population (p < 0.001).”


(1998-02-23) Prevalence of hidradenitis suppurativa in Denmark | “Hidradenitis suppurativa is significantly more common than hitherto estimated. The point prevalence was 4.1% (95% confidence interval [CI] = 3.0-6.0) on the basis of objective findings. The one-year prevalence of hidradenitis was 1.0% (CI = 0.4-2.2) on the basis of subject recollection only.”


(1998-12-9) Hidradenitis suppurativa | “Hidradenitis suppurativa usually affects young women, with a prevalence of 0.3% to 4% in industrialized countries.”


(2009-04-06) Hidradenitis suppurativa: a comprehensive review. | “Prevalence rates of up to 4% have been estimated.”


(2011-07-22) Two novel mutations of the nicastrin gene in Chinese patients with acne inversa | “The prevalence of AI has been estimated at 1 in 100 to 1 in 600.”


(2014-06-11) Hidradenitis suppurativa: number of diagnosed patients, demographic characteristics, and treatment patterns in the United States | “Recent regional and insurance database studies indicate that diagnoses of hidradenitis suppurativa (HS) are rare, with fewer than 200,000 affected patients in the United States. These findings are at odds with the generally accepted prevalence of approximately 1%.”


 

The above list is just a small selection of a half dozen. There are many more journals, if not the majority of papers that come out new and old that will often speak to prevalence as relevant to the specific study.

These studies have been conflicted and debated at times, but now in 2018 if listening to dedicated researchers and thought leaders, the debate has subsided and most settle on a 1% prevalence – often a statement terminated with a comparison to Psoriasis at 2% (which seems to often strike the unknowing Dermatologist pretty profoundly).

Every time I think about what the real global prevalence or population is for HS patients I often return with thoughts of literature that I once came across and have since shared often and hold close to my heart and mind for many reasons.  It is titled, The Voice of 12,000 Patients – Rare Diseases Europe”.

I recently wrote about this publication across social media before publishing here to our main website and have included my commentary below to share with you here and now.

As follows:

“WHAT EVERY HS PATIENT SHOULD READ”

  Published by Ron BercumeJuly 12 at 12:06 PM

I have shared this many times since I discovered it a while back and will continue to do so for many reasons. Most notably, as I was just discussing with a mutual friend of ours, it changed my entire perspective about my own personal circumstance as an HS patient, not long after I first learned what this disease was and put a name to it in 2015.

Long story short, at the time, I was very much hurt and angry at the world, a victim for being a patient of an Orphan Disease – that of a neglected patient population by the millions just like I was newly experiencing. Those treated poorly and neglected within the Healthcare system, culture, and Industry – the Stigmata. It was my new label, or identity. I was newly part of a very factually tragic and historical circumstance that HS patients have had to endure – an injustice for me at the time in my first few months after discovering what this work for #HSAWARENESS was or what I thought it should mean. Or what I thought it was or should be at the time. I was as at war and often used that language regretfully.

I was angry, alone, and hell-bent on doing something about it whatever the cost. I still may be in many ways hell-bent today, but I am far from angry or alone. Nor am I at war with anyone or anything.

It was finding this publication for the first time, that does not include a single word about #HidradenitisSuppurativa (HS), nor among the voices of 12,000 #RareDisease patients is that of a single one of us included.

My universe that first day reading through it became very much larger. I was no longer alone, or angry. I found clarity and some peace – a renewed focus realizing that the words on the pages I was reading could have been the stories of any of us, on any given day, but we not.

My entire perspective changed when I learned that our HS patient population, that our tragic circumstance was not far just our own cross to bare. That in fact, we are part of a much larger community of good people going through the same things.

It was and still is very humbling for me every time I go back to it. As it first sparked a larger interest for me in Orphan and Rare Disease, I have only continued reading and learning more. I enjoy sharing it with as many others as I can with hope that it will be as eye-opening for you as it was for me.

Do let me know if your experience might be similar to mine. I hope it is. Thanks for listening and taking the time.

Warmest,

Ron Bercume
Founder and HS Patient at 
HSAWARENESS.ORG & HSSUPPORT.ORG
email: hello {at] hssupport.org

 


The Voice of 12,000 Rare Disease Patients

The Voice of 12,000 Patients – Rare Diseases Europe

Via EURORDIS (@eurordis): “Rare diseases are often chronic, progressive, degenerative, life-threatening and disabling diseases. Many rare disease patients are denied their right to the highest attainable standard of health. To go beyond patients’ anecdotes and investigate experience-based opinions in a quantitative way, the EurordisCare2 and EurordisCare3 surveys were conducted. These surveys investigated patients’ experiences and expectations regarding access to diagnosis and to health services, for a variety of significantly relevant rare diseases across Europe. The results are reported in this book. “The Voice of 12,000 Patients” is intended as an information and advocacy tool for patients, patient organizations, health professionals, and health authorities.”

Available in electronic format or inbound paperback format.
https://www.eurordis.org/publication/voice-12000-patients


 

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