Like Case Sister, Cheryl Adams-Williams, a dentist, saw several doctors before she was given the correct diagnosis. However, lack of awareness in both patients and clinicians often causes a delay in diagnosis. Wigley said the drugs used to treat the disease work better “at the very early onset” than when the disease has already caused irreversible damage to a person’s tissue or skin. Fred Wigley, professor of medicine at Johns Hopkins University, who has studied scleroderma for 45 years. “It can be a very terrible multisystem disease, but not in all patients,” said Dr. For unclear reasons, the disease is often more severe in people of color. About 80% are women, most often between the ages of 30 and 50. In the United States, an estimated 300,000 people have scleroderma. “They named everything except what it was.” She went to regular doctors who said it could be lupus, it could be mental illness, it could be Epstein-Barr, Saget said. Her body, she said, it felt like her skin was burning. It can also damage internal organs, especially the lungs.
Symptoms of the disease include tightening of the skin, finger and toe pain, arthritis, muscle weakness and difficulty swallowing. “I can never get the pictures of the end of her life out of my head.” And I could not stand it,” the Case told LaPook in December. “It was a three-to-four-year process and she was gone.