Battling a rare, painful skin disease

By IN-SUNG YOO
Dec 14 2004
The News Journal, Delaware
© delawareonline.com/The News Journal

It's sometimes called acne inversa, and though that euphemism may suffice for medical textbooks, for Tamara Downes it hardly does justice to the suffering she has endured from hidradenitis suppurativa.

The rare skin condition, which can cause painful open boils and cysts under the arms, between the legs, and on the hips, has taken its toll on the Claymont resident over the last decade, costing Downes her two jobs and forcing her to go on disability.

Downes, 32, spoke with The News Journal about her ongoing fight for awareness and answers.

When did symptoms first appear?

My symptoms started showing up after I had my first son in 1994. It first showed up around my abdomen, where I had prior kidney surgery. The doctors assumed there was maybe a staple or stitch or some kind of foreign object in there from the kidney surgery. They did several exploratory surgeries and tests and could not figure out why the incision was opening up the way it was. These tests went on for five years. The wound got so big my doctors were just in total despair. They didn't know what to do. So they sent me to the wound care center in Riverside. They cultured the area, ran some tests and came back and told me it was Hidradenitis Suppurativa.

The way they explained it to me at the time - which was in 1999 - was that it was like a chronic cyst syndrome, and "don't worry we'll do an operation; nobody's ever died from it and you'll be fine." Well, I had the operation, and a few months afterward, I started breaking out in lesions again, this time in other areas. I found myself back at the wound care center again, not knowing what to do.

What do most doctors recommend?

They kept telling me lose weight, shower better; basically treating it as if it were an acne problem, which it's not. I was thin before this. I'm heavy because of the HS because when you sweat, your glands fill up with toxins and rupture out with infection, and when the drainage hits your skin, it feels like battery acid. Your skin (turns) beet red and you just can't move. ... You end up with a 104-degree fever and end up in the hospital. I came close to killing myself trying to lose this weight.

Who did you first tell?

I told my mother and husband first and kind of left it at that. Because at the time I thought it was something I did - I brought it on myself, I'm fat, that's why I have it. I must not be cleaning myself right. I felt very targeted. The doctors made me feel very embarrassed to have it. I think I've seen close to 50 doctors between emergency room doctors, specialists, wound care centers, bouncing between different physicians because they didn't have enough information on it. So far I've stayed in Delaware because of insurance reasons. One of my doctors wants me to go to Johns Hopkins because of a doctor there, but unfortunately, it costs a fortune, and my insurance won't cover it because it's out-of-state.

What is your daily routine like?

When I get up in the morning I have a very difficult time moving. Everything is swollen because it's been resting without any kind of medication for a period of time, and I've laid on it so areas have gotten irritated. My bones ache as if I have arthritis when I don't. It feels like your body is going through war on the inside. I take my medicine, and then I have to shower immediately to remove any of the residue from sweating at night. ... I'm constantly during the day going in and cleaning the area. It's very painful. I can't do the things with my children that I used to. ... There are times when my baby wants to run over jump on me and give me a hug and I have to quickly say "No!" and put my legs up because it's going to be so painful if she comes over and even hugs me. And that breaks my heart. Just the things that normal people do. I can't reach to comb my hair - it'll pull my wound open and bleed.

Where are you in coping with this condition?

The pain is both physical and emotional, especially when you're stage three, as I am. When I first was diagnosed, it was painful, but just annoying, frustrating. As it progressed, it went beyond annoying, it came down to "I can't take this pain anymore." If it wasn't for my three children, I don't know if I would be here anymore, because the doctors don't seem to care. Then you get into the emotional aspect; it's a depressing condition. It takes so much out of your life. I don't want to live on pills, but it's gotten to the point where, just to function beyond the bedroom, I have to.

What are you doing to find other people with this condition?

I'm part of an online support group, the HS leaders group, (which has) leaders in their different states. Mine is Delaware. We converse daily. I've also started a group site online for Delaware sufferers. My goal is to get the awareness out there, get some fund-raising going, so we can get adequate research.

The only way we are going to get a cure is if we don't sit back and wait for somebody else to do it. We have to start it ourselves. We have to get the doctors educated, we have to get research funded, we have to make the public aware so (sufferers) don't feel as if they have to stay in the closet. Help is out there - you're not alone.

 

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Photo caption

Tamara Downes, 32, of Claymont, has the skin disease hidradenitis suppurativa, which shows up as cysts and boils on various parts of her body. Doctors who have treated her generally have little information about the disease.

ABOUT THE DISEASE

Hidradenitis suppurativa is a chronic, relapsing disease of the apocrine glands, which produce the fatty sweat that lubricates the skin of the groin and underarm areas. The condition is typified by painful inflammation of these sweat glands around hair follicles which become blocked and infected, filling up with fluid which then discharges slowly, leaving open wounds and severe scarring. Most drug treatment has minimal effect, and surgery to remove the infected areas offers only temporary relief. Incidence of the disease is estimated at anywhere from 0.3 percent to 4 percent in industrialized countries as it is frequently misdiagnosed and sufferers are often afraid to reveal their condition. There is no known cause, and no cure.