Research and funding for Hidradenitis Suppurativa
  • Petitioned US Government

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Research and funding for Hidradenitis Suppurativa

    1. Tara Hudson
    2. Petition by

      Tara Hudson

      Auburndale, FL

Hidradenitis Suppurativa (HS), also known as 'Acne Inversa', is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration --- hence the name) involving significant scarring.

Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.

Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites (deep tissue inflammation) are likely at these sites.

Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.

HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon.

The mechanisms of the disease are described in this article.

Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million - potentially up to 12 million - Hidradenitis Suppurativa sufferers in the United States alone!

HS was first described in 1839 and has since been called many names. We still cannot agree on what to call it. Germans prefer Akne Inversa, the French still like to use Verneuil's, which we'll admit, sounds much better than Hidradenitis Suppurativa ('oozing inflamed sweat glands'). All are equally correct and equally wrong. All but names for symptoms of an underlying disease we don't yet know.

Stages of the Disease

Hidradenitis typically develops slowly over time. Since there are no 100% successful treatments it will run its course. Development differs, however, from individual to individual. With some, the disease may stagnate and never develop past a mild stage, with others, it may escalate and become a debilitating disease. We do not know why.
This is how HS may progress:
Stage I. Solitary or multiple isolated abscess formation without scarring or sinus tracts;

Stage II. Recurrent abscesses, single or multiple widely separated lesions, with beginning sinus tract formation ("tunneling") and cicatrisation (formation of scar tissue);

Stage III. Diffuse or broad involvement across a regional area with multiple interconnected sinus tracts, significant cicatrisation and persistent abscesses.

There is no cure or FDA approved treatments.

Source HS-USA

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    • Daniel c Cooke MAYNARDVILLE, TN
      • over 2 years ago

      My Mother needs help, Im tired of her in Pain.

      REPORT THIS COMMENT:
    • angela cooke MAYNARDVILLE, TN
      • over 2 years ago

      because im tired of the pain and getting cut on we are NOT chopping blocks

      REPORT THIS COMMENT:
    • Cordenia Paige BROOKLYN, NY
      • over 2 years ago

      I have suffered with this condition MOST of my LIFE! Too many doctors have NO idea what it is nor how to treat it & I'm tired of being the "guinea pig"/test case!!

      REPORT THIS COMMENT:
    • Jennifer Sissom MCALESTER, OK
      • over 2 years ago

      I am an HS suffer

      REPORT THIS COMMENT:
    • Michelle Lockett BIRMINGHAM, AL
      • over 2 years ago

      I'm a sufferer, the doctors have no clue what to do. I refuse to take anymore immunosuppressants. Please help us find the root problem and cure.

      REPORT THIS COMMENT:

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