CALEDONIA — Excruciating pain has been a regular facet of Rachelle Smith’s daily experience for about three decades.
Smith, now age 43, was first diagnosed with the mysterious and painful skin disorder known as hidradenitis suppurativa (HS) when she was 13. The serious, and often misdiagnosed and mistreated, immune-mediated skin condition literally took control of Smith’s life for many years, she said.
According to Smith’s physician, Dr. Scott Drew of Dermatology Associates of Mid-Ohio in Marion, HS “starts out with bumps or knots or boils in areas where skin folds, like under the armpits, below the breasts, in the groin, on the buttocks, on the thighs, wherever sweat accumulates. It looks like small pimples and people often think they have this unusual kind of acne.”
Drew said the condition primarily affects females, especially young women beginning puberty. In addition to great pain, the lesions also create a foul odor. He said about 1 in 1,000 people are afflicted with HS.
“It was under my armpits on both sides, very red, boil-like symptoms with it,” said Smith, who has lived in Caledonia for about 15 years. “Lots of ER visits. Lots of doctor visits. Nobody really knew exactly what it was until I was 19. It was finally diagnosed as HS.”
Even though physicians had finally reached the proper diagnosis, Smith’s pain and suffering was far from over.
“They sent me to a surgeon at that time to remove my sweat glands, thinking that would cure the issue, but it didn’t,” she said. “They did many rounds of antibiotics, but I became antibiotic resistant. Then they actually removed my sweat glands again when I was 23, but it still didn’t help. And then it was back and forth with multiple physicians and dermatologists.”
It would be nearly another two decades, with visits to 10 other doctors, before Smith would find a physician and treatment that could provide her with relief from the debilitating disorder.
“Within the last two years I went to Dr. Drew,” she said. “He was the one who suggested trying the Humira injections. I was very skeptical about it, but it has worked wonders since I’ve been on it.”
Drew, who’s been practicing medicine for nearly 30 years, explained that Humira, the brand name for a drug known as a TNF Alpha blocker, has been successful in treating HS patients like Smith. He said patients suffering from HS were found to have elevated levels of the chemical TNF Alpha in the lesions that formed on their skin.
“When patients were given this drug, all of a sudden, their (HS) started to go away,” he said. “With TNF Alpha blockers, we have an opportunity to treat this disease, not only when it’s really bad, but we can treat it early. I have about 55 or 60 people who are on this drug.”
Smith said the drug has allowed her to lead a normal life for the first time in three decades.
“I’ve had no outbreak since I’ve been on these injections,” she said. “Now I can be physically active. I can ride my bike in the summertime. We can take the dogs for walks. I can go swimming. It’s totally different for me now.
“My husband suggested that I try seeing (Drew),” Smith added. “I guess, in my own mind, I felt like, ‘Well, what’s one dermatologist going to do that the other ones haven’t?’ But, low and behold, my husband was right because (Drew) had the one treatment that actually worked for me.”
Drew said the TNF Alpha blockers have been used to combat HS for about 10 years. Previously, painful surgery was one of the primary approaches physicians used to try to provide relief for their patients with HS.
Smith offered some advice for her fellow HS patients.
“If your treatment isn’t working, keep talking with your doctor,” she said. “Try a second, third, or fourth opinion. Just don’t give up. There is treatment out there that does work. Know that you’re not alone. Don’t let it bring you down. Keep looking. Keep trying.”
Family support has been crucial during her struggle with the disease, she said.
“My mom was my best friend growing up, because she was the only one I wanted to share with what I had going on,” Smith said. “My husband, for the last 12 years I’ve been with him, has been an excellent source of help, someone to talk to and understand, help me through it, and bandage my arms when I had problems. They’ve just been so important in my life.”
Smith and her husband, Randy, have three children between them, two daughters and a son.
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