Hidradenitis Suppurativa: A Hidden Illness

Hidradenitis Suppurativa is a skin condition, also commonly known as "Acne Inversa." The glands in the inverted areas of skin (armpits, groin, behind the knee and under the breast), the perineum, the neck, behind the ears and various other locations are affected by painful, recurring lesions that begin as "pimples," but eventually drain puss and progress to tunneling under the skin. There are three stages of HS.

Stage I consists of a history of acne and sometimes boils and cysts during the teen years. Some do not get into Stage I until 20 years of age. I got my first boil at 9 years of age. During stage I these lesions are diagnosed as "pimples." Doctors see pimples and prescribe benzoil peroxide, in one of its many over the counter forms.

Stage II presents with multiple "cysts," which may or may not drain pus. Doctors told me to use warm compresses (also known as balneotherapy), and assured me they would go away. They did not go away. I had to have both my armpits drained at various times in my early twenties. In my late twenties, lesions began to present themselves in my groin and inner thigh. They seem to begin as pimples, but never go away. The lesions progress to dark purple coloration and scarring begins to take place.

Stage III shows signs of tunneling under the skin. A network of subcutaneous puss tunnels ails the victim. In this stage, lancing or draining is no longer an option. Large areas of skin will be removed from the affected areas, called skin grafting. Hospitalization for the procedure is definite.

HS is a "hidden" illness because it occurs in the most private areas of the body. Our private areas are usually covered, therefore, no one sees our disease. Because our private areas are affected, we have less of a desire to share this condition with anyone, even our own doctor. This inhibition cannot keep us hurting, silent or control our health if we don't allow it. There is no shame in coping with a disease you obtained through no fault of your own!

One of the most difficult things to comprehend for me was being told that I need to be more clean (by my doctor). Hidradenitis Suppurativa is not caused by being dirty- that's a fact. I feel there is something special about the inverted areas of skin that we just don't know yet. My (rural) doctors have proven to be quite ignorant on the subject of HS.

We do know that opportunistic infection does occur, however most lesions are sterile. Few HS lesions contain significant bacteria or virus. In my opinion, the lesions grow as a result of the body's response to stress- at least that's the recurring theme in all of the conversations I've had with other HS sufferers. Some people with HS sweat more than others and some do not. I propose my excessing sweating under stress aggravates my HS.

Many HS patients are affected by other (sometimes auto-immune) diseases, such as Crohn's Disease, PCOS, Diabetes and Acne among others. There is an ongoing debate in the medical community about whether HS is an auto-immune or an immuno-deficiency disease. No one will argue that we need more information. More research needs to be done.

My HS is familial- I inherited the disease from my parents. My brothers and sisters have it as well, in varying degrees. I assure you, there is no amount of cleanliness that will prevent a lesion from presenting itself. I have always been a "clean freak," as my loved ones say. My siblings and I are good productive members of society but a disease like this can undermine self-esteem.

My hope is that anyone with HS (Hidradenitis Suppurativa) can learn to live with the disease without self loathing. The best thing to do for yourself is to love yourself unconditionally. Another tip: try to live as stress-free as possible, since stress is a known trigger for this disease. Exercise and eat well so that you feel well. Finally, try to connect with people who have HS. Emotional support from friends always makes coping easier. I have been researching this disease for the last ten years and have made more progress in the last three than ever. I would love to hear from others about their HS and strategies that work.