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April 18, 2014 | SOI General: Headquarters

Two Athletes Share a Rare Disease, Gold Medals and Guts

By Lynn Aylward

The Striegels

Ryan Groves and Steven Striegel share several things. They both are both in Special Olympics, love basketball, and hold gold medals. They also share tuberous sclerosis complex (TSC), a rare genetic disease that affects 50,000 Americans and one million people worldwide. TSC results in typically benign tumors that primarily form in the brain, kidneys, heart, eyes, and skin. Depending on the location and severity of the tumors, people with TSC can be severely mentally and physically disabled, or may seem unaffected by the disease. For those adversely affected, the challenges can be intense. But Ryan and Steven -- who are profiled this month in Neurology Now -- work, play sports, and socialize, often with friends they've met through Special Olympics. One additional challenge for people with TSC and their families is that the disease is little-known, even though it may actually hold a key to understanding more common conditions such as cancer.

About Lynn Aylward: I work in communications for Special Olympics

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