Scleroderma affects about 300-thousand Americans. There's no cure and doctors know very little about the mysterious disease. Now, a new center is making it a mission to find out more.
Sometimes it hurts a lot to five-year-old Daphne Mura.
Suzanne Li, MD, Senior Attending Physician at Hackensack University Children's Hospital, stretches Daphne's joints, which can get stiff. Daphne has a rare autoimmune disease called scleroderma that actually causes the skin to harden.
Dr. Li explained, "Sclero is hard, and derma is skin."
Daphne's mom knew something was wrong for a while.
Rachael Mura told Ivanhoe, "She seemed to be more cautious than other children her age not moving as quickly."
Doctor Li says when the condition affects kids it can be challenging to treat.
"In children, it can be a really big issue because children are still growing so that hard skin can prevent normal development of their limbs; can prevent normal development of their joints" Dr. Li explained.
There's no cure and doctors don't know what causes it, but the Center for Scleroderma at Hackensack University Medical Center in New Jersey is dedicated to learning more. Dr. Li says recognizing the symptoms may be the first important step.
Dr. Li told Ivanhoe, "A lot of these kids will have the disease for years, decades, well into adulthood. So I think recognizing the disease and trying to treat it more aggressively when they are younger is hopefully going to lead to a better outcome."
Some symptoms include: a skin rash that doesn't go away, sensitivity to cold, numbness or color changes in the fingers or toes, acid reflux, and stiff or weak muscles.
Daphne's lungs are now affected by the disease. She hopes research will provide more answers, and one day a cure.
When scleroderma impacts the heart, lungs, or kidneys, it can become life-threatening. The disease can affect every age group, from infants to the elderly, but its onset is most frequent between ages 25-55. Women are much more likely to suffer from scleroderma.