Scleroderma: A Rare but Devastating Disease

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"We have a very effective treatment for the kidney disease, and it's really changed the course of the kidney disease," Merkel said. "We have good treatment for heartburn and gastrointestinal problems. We have some treatment with immunosuppressive therapies with lungs. But we don't have great treatment for the skin, which is the cardinal treatment of the disease."

Feghali-Bostick hopes that increased attention will turn to this disease, and with that attention increased funding to help solve its riddles.

"Scleroderma is not less frequent than multiple sclerosis, but MS gets 10 times more funding," she said.

More information

To learn more, visit the Scleroderma Foundation.