Scleroderma strikes women four times as often as it does men.

KHOU-TV

The hardened patches of dry skin change color.

Houston doctors are working to find out what causes the autoimmune disorder.

There is also research under way in the Texas Medical Center that could lead to a cure for a disease whose name literally means “hard skin.”

At a distance it’s harder to see.

Up close, Stephanie Daniel’s battle with a rare disease is more evident.

“My hands felt like ice, like they were going to break,” she said.

At 21 she found out the hardened patches of dry skin was scleroderma.

“When you see it you feel like a monster just the skin so tight, and then the pigment changes,” Daniel said.

Her body was overproducing collagen. Her immune system was attacking its own tissue.

“Some people have very mild disease — it doesn’t impact their life span, and other people have more severe disease,” UT Health Science Center Dr. Maureen Mayes said.

Daniel was so sick the inflammation and scarring spread to her lungs.

Before there was a treatment half the patients with early severe scleroderma died within five years.

Dr. Mayes is leading a clinical trial at UT Houston’s Clinical Research Center at Memorial Hermann Hospital.

Half the patients get cytoxin, a chemotherapy drug once a month over a year’s time.

The other half gets a high dose of chemotherapy for a few days then undergoes a stem cell transplant.

“There is about a 10 percent mortality rate in the transplant arm, so we’re trying to determine if that risk is worth the benefits,” Dr. Mayes said.

Daniel believes it is. She got a stem cell transplant in June.

“I expect to do much better every month that comes, and go out on my own and do what I always wanted to do and get back to me,” she said.

Back to living life to the fullest.

Researchers at the University of Texas at Houston Clinical Research Center are looking for more scleroderma patients with early, severe onset of the disease to enroll in the study.