(NEW YORK) — Shanyna Isom has consulted every possible specialist, including a doctor in the Netherlands, but she still has no idea what is wrong with her.
The 28-year-old beautician and former University of Memphis law student has developed a condition so severe, fingernails grow from the hair follicles all over her body.
“Black scabs were coming out of her skin,” said her mother, Kathy Gary. “The nails would grow so long and come out and regrow themselves. They are hard to touch and stick you.”
The disease so far has affected not only her skin, but her bones and her vision. Because Isom is unable to walk without a cane, her mother helps her out of bed each day.
Doctors at Johns Hopkins Medical Center in Baltimore, where Isom is being treated, told her family that she is the only person in the world with this unknown condition.
And now, she has $500,000 in unpaid medical bills. Isom has state insurance, but it doesn’t cover medical care in Maryland. Her mother lost her job as a medical receptionist because she looks after her daughter at home, so savings have dried up.
Once a month, mother and daughter travel to Baltimore from Memphis, Tenn., to monitor her treatment.
But now, Isom has put all of her energy into creating the S.A.I. Foundation (named for her initials) to help others with mystery illnesses.
Bank of America has agreed to take donations at any of their branch offices. Friends have organized fundraisers, and her high school has dedicated a football game to her charity.
Despite her debilitating illness, Isom told ABC News, “I don’t know whether to smile or cry. I am very blessed.”
Isom was a junior studying criminal justice when the mystery illness first occurred in September 2009, according to WLBT-TV in Memphis, which first reported the story.
After baffling her Memphis doctor, Isom went to Johns Hopkins in August 2011, 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.
Doctors think her skin isn’t getting enough oxygen — she is also lacking sufficient amounts of vitamins A, B, C, D and K, according to her mother.
But with treatment, she is improving.
“Her legs aren’t covered in black scabs,” said her mother. “They are looking better, and her face just looks like she has a real bad sunburn.”
Copyright 2012 ABC News Radio
Sam Penrod, KSL.com
Susan Scutti, CNN
Kevin Conlon, Euan McKirdy and Johanzynn Gatewood, CNN