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For example, immunosuppressive medication such as Cellcept mycophenolate is now commonly used, often early in the disease course, and delivers a strong benefit to many patients.
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The standard of care has advanced over the past two decades, as compared to when Bob’s sister Gay was treated. I know there’s no cure, but have there been any new developments that reduce some of the symptoms or slow the progression of the disease? However, there’s no one blood test that tells a physician that a patient has scleroderma. The antinuclear antibody (ANA) test is positive in approximately 95 percent of patients with SSc, and therefore a negative test should prompt consideration of other fibrosing illnesses. Also, the disease progresses at different rates for each patient. Moreover, the disease can affect different organs in the body in different patients, including skin, pulmonary vasculature, pulmonary tissue, heart, GI tract, and musculoskeletal system. The diagnosis of SSc is based primarily upon the presence of characteristic clinical findings and supported by specific abnormalities observed from a blood test. However, no one of those clinical findings is unique to SSc. Scleroderma is heterogenous (we are referring to the systemic form since the designation “scleroderma” typically refers to systemic disease - abbreviated SSc - although there is a localized version of the disease), meaning that each patient presents with different features as compared to the next. It remains a reality that many patients aren’t accurately diagnosed early in the disease course. A diagnosis of Scleroderma is often elusive and some patients are not appropriately diagnosed for several years. Approximately 80 percent of people with the disease are women, although men and children can also get scleroderma.
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In the most serious cases, complications result in damage to the heart, lungs, and digestive system.
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The name scleroderma literally means “hard skin” because the disease results from a patient’s immune system attacking their organs, which in turn can stimulate overproduction of collagen (the key protein component in scar tissue), leading to the hardening and tightening of the skin and connective tissues (fibrosis). Luke Evnin: Scleroderma is a rare and often life-threatening autoimmune disease that can cause fibrosis in the skin and other vital organs. Katie Couric Media: First and foremost, what is scleroderma?ĭr. Katie spoke to Luke Evnin, Ph.D., the chairman of SRF’s Board of Directors, to learn more about Saget’s legacy. Upon his passing, people have been reflecting on the impact Saget had in both the comedy and medical worlds.
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He was on the Board of Directors at the Scleroderma Research Foundation (SRF) and aided in raising millions of dollars that helped further research of the disease. Those who grew up watching him raise his three onscreen daughters can probably still hear his problem-solving speeches and pep talks, and will for years to come.īut Saget’s legacy is much larger than that of just a sitcom icon: He was fervently devoted to raising awareness of a disease called scleroderma, an autoimmune disease that took the life of his sister Gay Saget in 1994.
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Most of us will remember Saget for his humor, or the way he shaped 90s TV as the lovable, clean-freak single dad Danny Tanner on Full House. The actor and beloved small-screen mainstay died at the age of 65 his cause of death is still being investigated. Comedy fans everywhere were shaken earlier this month when Bob Saget passed away.