Woman with mysterious ailment being studied
Sunday, September 9, 2012
MEMPHIS, Tenn. (AP) — One after another, from Memphis to Nashville, doctors gave up on Shanyna Isom. None of them, it seemed, had even heard of a condition like hers, much less knew how to treat it.
Less than a decade after she had been a popular, vibrant cheerleading captain and "Miss School Spirit" at Westwood High, Isom became the embodiment of a medical mystery: Why was her skin suddenly sprouting solid, stemlike growths?
"It looks like rice grains growing," said Isom, 28, who shares a modest brick home with her mother in the Westwood area of Southwest Memphis.
The ailment, as debilitating as it is embarrassing, finally led to Isom's referral to The Johns Hopkins Hospital in Baltimore, where she's become the focus of intense study by a team of doctors and the National Institutes of Health. She travels to Johns Hopkins almost monthly, with her and her mother paying their air and hotel fares while the hospital provides treatment for free.
She's shown signs of improvement. But the cause of her condition remains a mystery.
"In my 20 years (of practice), I have not seen a patient with the kind of skin changes she has," said Dr. Sewon Kang, professor and chairman of the department of dermatology at the Johns Hopkins School of Medicine.
"We are doing our best to not only improve her condition but to help understand for us and the family what might be driving the skin changes."
Isom, who pronounces her first name SHAY-na, traces her troubles to a 2009 asthma attack she suffered while walking to class at the University of Memphis. Her breathing became so constricted that, after being taken to a hospital, she was administered heavy doses of steroids.
Once she got home, Isom experienced intense itching on her legs and arms — symptoms, she says, of an allergic reaction to steroids. After a Benadryl shot, the itching stopped for a while.
"A day or so later, the itching came back even stronger," she said, adding that her body also began to "bump up."
After three months of medication — and visits to more and more doctors — the skin problem spread. Later came the strange growths — Isom calls them "stems" — protruding from her skin, mainly on her head and upper body. The nail-like stems grow up to 2 inches in length and fall out, only to be replaced by new ones.
The growths, Kang said, are composed of keratin, the fibrous structural proteins that make up the skin's outer layer, rendering it strong and almost waterproof to protect the body against parasites, infection and water loss.
For reasons still unknown, the keratin that should be coating Isom's skin is instead piling up in follicles to form the stems. "It's basically congregating in a manner that is unusual," Kang said.
The affliction, which has no name, is much more than a cosmetic problem. It's affected Isom's ability to eat and weakened her to the point she has trouble walking. She lost her hair, shed more than 150 pounds and suffered vitamin deficiencies. She can't go out in the sun.
"Every aspect of her body is affected by it...," said Dr. Julie Zang, resident physician in dermatology at Johns Hopkins. "Basically, she's using all her energy, her nutrition, to make these stems."
For Isom's family and friends, it's been difficult to watch the ailment take its toll.
"It's a nightmare," said her mother, Kathy Gary. "I just keep pinching myself hoping I'll come out of a dream."
Tolungia Webb, Isom's school classmate and best friend, said she can't wait to see her return to health.
"She's always been fun-loving, enjoyed life — always happy," Webb said. "It was just eye-popping the way she carried herself. People, when they saw her, they just knew there was something about her."
Kang, searching for a cause, said that while the steroid treatments for asthma preceded Isom's troubles, he's not sure they actually triggered the affliction. "Whether the two events are causally related or not is unclear," he said.
He's focusing on possible genetic factors that might be driving the ailment. The Johns Hopkins team is sequencing Isom's DNA in an effort to "hone in on what kinds of genes might be influencing her skin changes," he said.
"We don't have the answer yet, but we're getting closer to understanding the genetic malfunction that may be driving the process."
In the meantime, Isom, who says she's seen some 200 doctors and undergone 11 surgeries and more than 100 biopsies since the affliction struck, now is dealing with mounting medical bills. Her TennCare coverage pays for less than a third of the prescription medications she needs, and she and her mother go further into debt paying the $2,500 or more it costs for each trip to Baltimore.
Isom's mother, a medical receptionist, lost her job because she missed so much work attending to her.
"She lost everything taking care of me. She lost her car, her home, her job," Isom said.
Friends, family and neighbors in Westwood have tried to help with the costs. They've held fundraisers and helped her launch the SAI Foundation to accept donations and work for a cure. Anyone wishing to donate can visit the website, sai-foundation.com, or make a contribution at any Bank of America branch.
Despite the troubles, Isom is upbeat. She's improved enough to begin going out in public again, and she still nurtures dreams of getting a criminal justice degree at U of M.
"I still feel embarrassed about (the condition), but the attention and feedback I've gotten makes me feel better," Isom said. "I'm getting much better day by day."
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