Disorder drawing attention
Campaign launched about hidradenitis suppurativa

Friday, June 24, 2005
BY STEPHENIE KOEHN
News Staff Reporter
© 2005 Ann Arbor News.

Now in his 50s, the Hamburg Township resident has continued to be plagued by the bumps, which he now knows are the result of a little-known but relatively common condition called hidradenitis suppurativa, or HS. The effects of the disease, which causes deep-seated boil-like lesions in certain sweat glands known as "apocrine glands,'' have practically ruined his life, Dean said in a recent telephone interview. Because of the ravages of HS, Dean said he lost his job and family and has suffered emotional damage, as well.

When he moved to Florida in his mid-20s, he began to realize there was probably something more serious afoot than an occasional "boil.'' After a particularly troublesome bout, "the doctor thought I had cancer and put me in the hospital, but it wasn't cancer.'' Dean said. "The doctor opened the wounds to let them heal from the inside out. Six months later, it happened again.''

The attacks had migrated from his underarm area to his groin area and Dean ended up seeing a plastic surgeon because of the disfiguring scarring. "He realized it was a sweat gland problem. Ultimately, that doctor excised the affected aprocrine glands and Dean ended up loosing most of the flesh in his buttocks and underwent extensive skin grafting, making it impossible to sit for more than a few minutes at a time.

He is bitter about the terrible toll it has taken on his life. During active flare-ups, Dean said, he sometimes can't work for a week or two, making it difficult to hold a full-time job. And he wants people to know it's not contagious and that it's not caused by a lack of personal cleanliness.

"It can be a life-altering disease,'' said Dr. Wendy Long, a dermatologist with the University of Michigan Health System.

HS is a chronic, progressive and often disabling inflammatory condition of unknown cause that affects the apocrine sweat glands. It typically strikes its victims - most of them women - during puberty or sometime thereafter, after the apocrine sweat gland system becomes active, she said.

"The lesions, which recur in the same place, often end up connecting with each other. It's painful, it can have an offensive odor and it often creates clothing issues.'' Victims, she said, tend to dress so as to lessen the likelihood of sweating or irritation, which can trigger the inflammation. HS also is hormone-dependent and there appears to be a hereditary component, Long said.

"It's frustrating for practitioners and patients alike because it's unpredictable,'' Long said. "It's a very common condition. It's important for people to know that it's not normal to have recurrent boils and that they should seek treatment.''

Vix Kennedy, of Hamburg Township, whose wife is Dean's stepmother, has been so perturbed by Dean's story that he has gone to great lengths to learn about it and raise awareness in the medical community and the public. In 2002, he founded HS-USA, a non-profit organization aimed at providing support for HS patients, education about the condition for both medical professionals and the public and encouraging research into its causes.

Last weekend, the group had its second national conference in Brighton at the Holiday Inn Express. Kennedy said he was heartened by the number of people who signed up for the conference, which featured speakers on alternative therapies and potential cures for HS and on Crohn's Disease. "We even expect some walk-ins,'' Kennedy said Thursday. Coming up July 7, the group also will air a 30-minute program about HS on Ann Arbor's CTN cable television network, he said.

"It's important to get the message out,'' Kennedy said. "The life of a person with HS is a struggle, often alone and without hope for successful treatment or a cure. It can be overwhelming to a newly diagnosed patient to find so much information about this debilitating disease, but very little talk of a cure.'' By some estimates, HS afflicts approximately 1 percent of the U.S. population and the same number worldwide, he added. Exact figures are difficult to calculate, because fewer than one in 10 of those who have it report it or seek medical help.

The first line of defense, Long said, is the use of antibiotics. Local excision (lancing) and drainage are a quick but temporary fix. Doctors have had some success with steroids injected directly into the lesions and short-term use of oral steroids. Some women patients are helped by contraceptive pills.

So far, aggressive treatment with Accutane offers the highest chance of a cure for most patients. "But Accutane can cause very severe birth defects, so we require our patients to be on two forms of birth control,'' Long said.

The only good news in this bleak picture is that although it has a lifelong tendency the disease tends to burn out with age, Long said.

Reach Stephenie Koehn at skoehn@livingstoncommunitynews.com or at (810) 844-2008.