What is Hidradenitis Suppurativa?
Hidradenitis Suppurativa (HS), also known as ‘Acne Inversa’, is a non-contagious, recurrent 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 typically manifests itself 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 cellulitis (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.
Although the cause of this disease is unknown, very little research is being conducted on Hidradenitis, with Europe at the forefront. There is essentially NO research being performed in the United States! 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!
What’s in a name…
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.
…”correct” names for this disease:
Hidradenitis Suppurativa (HS)
alt: Hidradenitis Supportiva
Acne Inversa (AI)
Pyodermia sinifica fistulans
…has been diagnosed as, but is not:
Cysts (sebaceous, inclusion and subcutaneous)
…is definitely not:
…often happens in conjunction with:
PCOS / Insulin Resistance / Androgen Dysfunction
Crohns and other inflammatory auto-immune conditions
Hyperhydrosis / hyperhidrosis
Do I have HS?
If you think you may have HS, you should interview some doctors (General Medicine, Dermatology, Plastic Surgery). Ask if they have dealt with this disease before. Then see the one you are most comfortable with as a partner in a difficult treatment path. Be familiar with the information provided below before you visit your doctor.
We at HS-USA are often asked for local physician recommendations. We have no way of doing that. However, we can provide YOU, the patient, with a tool to exchange information. If you’ve found a great doctor, your recommendation may help another sufferer get the quality care he/she deserves.
Please check in with the Doc Exchange!
The Doctor Pack
Things to read, print, and bring to your doctor’s appointment
eMedicine – very comprehensive summary of HS medical information.
Must read BEFORE you see any doctor!
- Patient Survey Data may be helpful as a conversation aid with your doctor. Once you have been diagnosed, please remember to take the time to submit the surveys as well.
- A Treatment Challenge (pdf) from the Association for American Family Physicians. A six-page handout to take to your doctor.
- The hs-usa tri-fold brochure. Print it or order it professionally printed right here from this website. Order a few to put in your doctor’s office waiting room.
- Hidradenitis Suppurativa – Jan von der Werth – your doctor must see this!
- Know about Accutane and why it rarely works with HS.
Frequently Asked Questions
So you’ve been diagnosed and have seen a doctor, but still have lots of questions? Make sure to look up our HS FAQ. You can find a LOT of info there ranging from the history of hidradenitis, to care tips and book recommendations.
It is very important to connect with other people who suffer from Hidradenitis Suppurativa. Nobody understands your issues and pain as well as someone who suffers them too. There are many of us out there. Contact your state representative and join a regional support group online. Or choose one of the many online groups that matches your interests and character.
You’re not alone!
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 certain 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 sinus tract formation and cicatrisation;
Stage III. Diffuse or broad involvement across a regional area with multiple interconnected sinus tracts and abscesses.
Images of the Disease
Please use caution! Images of Hidradenitis Suppurativa are often difficult to view and are not for the squeamish. Note that there are different stages and manifestations of this disease. These images should provide you with a general guideline. Please see your doctor for a diagnosis!
- Dermis NET images of Hidradenitis Suppurativa
- Dermatologic Disease Database (DDD) by AOCD on HS
- Hidralibrary.com picture library
- Johns Hopkins University Dermatology Image Atlas
- Tammie’s pictures
Information for Medical Professionals
Please visit the hs-usa abstract database: HS-specific information and medical news, categorized and fully searchable.
“Unfortunately, the treatments most commonly used today are the least effective and can be positively harmful. Incising a non-fluctuant boil is only going to make matters worse and should be avoided. Excising an acute inflammatory lesion and closing the resulting wound primarily is also wrong as there is a very high rate of, often immediate, recurrences in such cases (approximately 80% recurrences). (17, 18) When excision is performed, healing should be by secondary intention. Another frequent mistake is to prescribe penicillins or short courses of other antibiotics. Virtually every patient with at least moderately severe HS will testify to the fact that short courses of antibiotics on their own are unhelpful. What is worse is that many patients who are prescribed such treatments feel ‘fobbed off’ with less than useful medication and ultimately end up turning their backs on the medical profession. Such a step is crucial as many of these patients feel unable to confide their problems to anyone other than a general practitioner or specialist.”
Hidradenitis suppurativa – Jan von der Werth
Dermatology in Practice, Volume 9, Number 3