Susac's Syndrome

By Nancy, United States, January 30, 2014

I have a rare auto-immune disease that has been diagnosed in about 400 people worldwide. I lost some vision, hearing and had horrible migraines. I know others who suffer with encephalopathy (brain lesions that cause paranoia & memory loss), spastic gait, numbness, loss of balance and muscle pain. Some are blind or deaf. Some have bowel problems. Others are disabled. A recurring theme within the SS community is that the medical profession is often uninformed, and treatments are expensive and considered experimental by insurance companies. Often people with this affliction have permanent damage due to years of being misdiagnosed or not diagnosed at all. Please help us spread the word!

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