Rare condition has woman growing nails all over her body instead of hair

April 20, 2018 lilit 0 Comments

Despite seeking every possible cure for her condition, no doctor could diagnose what was wrong with Memphis resident Shanyna Isom.

The 36-year-old beautician has been afflicted with a disease that has causes fingernails to grow out of hair follicles all over her body. The issue which has plagued her since 2009 causes her immeasurable pain all over and bone issues, among other problems.

"First, black scabs began to come out of her skin," her mother, Kathy Gary told ABC news. "The nails would grow so long and come out and regrow themselves. They are hard to touch and stick you," she explained further.
A deadly disease with no name

It all started when Isom, who was a law student at the University of Memphis in September 2009, suffered a life-threatening asthma attack. Isom was taken to the emergency room at the local hospital where she was given a large dosage of steroids. But Isom developed an allergic reaction to the steroids, due to which her skin began to itch uncontrollably.

The itching grew stronger and soon enough, her legs turned black. At the same time, Isom was losing 10 to 15 pounds a week. "It looked as if she had been in a house fire and gotten burned," Gary explained about her daughter's scabs.

Initially, doctors thought that she had eczema or a staph infection and prescribed drugs for the same. But Isom's condition deteriorated. Meanwhile, all tests for any possible skin condition came back negative. Even a bone marrow biopsy came out negative, leaving her doctors baffled.

"We could not figure out what was going on," her mother explained. "She was just breaking out everywhere. Her body was scabbed all over."

"He [the doctor] said she would be like that for the rest of her life," said Gary. "But I couldn't accept that."

Isom and her family persisted, and in August 2011, she went to Johns Hopkins where doctors determined that she was producing 12 times the number of skin cells in each hair follicle. Instead of growing hair, the follicles were producing human nails.

The disease so far has afflicted not just her skin, but even her bones and her vision. Isom is unable to work without support and uses a cane for mobility. According to doctors at Johns Hopkins Medical Center in Baltimore, where Isom was being treated until 2010, she is the only person in the world who suffers from this bizarre condition.

At first, doctors thought that perhaps her skin wasn't getting enough oxygen. Furthermore, reports revealed that Isom was also deficient in vitamins A, B, C, D, and K.

But it isn't just the disease that Isom's mother had to worry about. Up till 2010, Isom had $500,000 in unpaid medical bills. Even with a state insurance cover, Isom's medical care wasn't part of the state cover. Even her mother had lost her job as a medical receptionist because she had to look after her daughter at home, leaving the family with little savings.

"It has taken all of my hair out and has left my body with scabs all over it, plus I have lost about 200 pounds. I was a healthy woman on my own ... had big dreams and goals that I was following until one day my body completely shut down on me," Isom wrote on her blog Pray for Shanyna.

Hope never dies

With no respite in sight, Isom's condition had her spiraling downwards into depression. But even in her darkest conditions, Isom found light at the end of the seemingly never-ending tunnel—thanks to the support of her friends and family.

"I don't know whether to smile or cry. I am very blessed," Isom told ABC news. Instead of wallowing in her pain, Isom channeled all her energy into creating the S.A.I. Foundation (so named for her initials) to fund research and find others who might be suffering from the condition. 

Organizations like Bank of America had agreed to take donations at any of their branch offices. Even Isom's friends organized fundraiser's, including her high school, which dedicated a football game to her charity.

"I know it's a blessing that I can reach out and touch people's hearts," Isom stated, explaining how her perspective changed once she saw how her pain was nothing compared to what she saw at John Hopkins. She remembers the day at Johns Hopkins when she felt sorry for herself, shuffling through the corridors on a walker.

"I saw a little girl, 4 or 5 years old, and she was walking through the same hall and had the biggest smile on her face," said Isom. "She had braces from [her] hip to her feet and had a walker and held her head up so high. I thought, 'If she can, I can. I had a life. This baby is trying to have a life.' ... I fed off her energy."

That moment became her prayer and she made a promise to herself—"I will never be selfish again." Even Gary was inspired to regain her strength and not lose hope again. 

"Shanyna is remarkable," said Gary. "She has been able to hold her head high. I keep telling her we are going to make it, through the grace of God." 

Currently, on more than 25 medications, Isom has been showing some signs of recovery and all the credit goes to the doctors at John Hopkins.

"The doctors are so caring," Gary explained. "It's just amazing how much they have done for her. We really didn't think she was going to make it."

We hope that Isom finds a permanent solution to her condition.

Watch her story here:

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