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Like many autoimmune diseases, systemic sclerosis, or scleroderma, can be a challenge to diagnose because its symptoms are varied, can range from mild to debilitating, and often resemble those of other conditions, such as systemic lupus erythematosus and rheumatoid arthritis. Although hardening of the skin is the most characteristic sign of scleroderma, what’s called “Raynaud's phenomenon” (visible color changes in the fingers and toes in response to cold exposure or stress) is its most frequent symptom. Lung, kidney, and gastrointestinal problems can also develop. Symptoms can come and go, and are easily mistaken for other diseases, prompting many people to go from one specialist to another. Then, when they finally receive a diagnosis, many patients feel frustrated to face a disease that few people have heard of, let alone understand. Even doctors and researchers are trying to better understand it. “With a disease like scleroderma, I think you need to step into the patient's shoes and see things from their perspective,” says Monique Hinchcliff, MD, MS, director of the Yale Medicine Scleroderma Program and clinical director of research for rheumatology at Yale School of Medicine. “I don’t ask patients to participate in activities related to research that I wouldn’t do myself. I ask patients to donate skin biopsies, and I have donated skin biopsies. I ask patients to undergo bronchoscopy and lung lavage (where fluid is introduced into the lung and then sucked back out to obtain lung cells), and I have undergone bronchoscopy and a lung lavage procedure, so there's a tube of my lung cells in our freezer.” The program has a multidisciplinary team to help scleroderma patients manage the multiple symptoms the disease can cause-and there are treatments for many of those symptoms. For instance, there are now 13 medications approved by the FDA (all becoming available beginning in 1995, says Dr. Hinchcliff) to treat a scleroderma patient with pulmonary arterial hypertension (PAH), a type of high blood pressure in the lungs. “I am dedicated to finding a cure for scleroderma,” Dr. Hinchcliff says. “In the meantime, I want to find better treatments for symptoms so patients can enjoy their lives as fully as possible.”