Scott’s story

Scott was First diagnosed with optic atrophy (20/400 vision in best eye), mild hearing loss and severe neuropathy in the hands at the age of 4. But at 18 years of age he went suddenly deaf, followed by the development of further major problems at age 29. Sadly the Neuropathy in his hands got worse at age 37, and he had to give up work.

Last year his neurologists sent his blood to Henry Houldens team for testing. And recently he received the diagnosis of Brown Vialetto Van Laere Syndrome, and has been told he has the SLC52A2 mutation. He now follows the riboflavin Protocol and is taking 1200 mgs per day

Scott is a very positive individual whom, even with all of his medical issues worked his way through university receiving a BSE in Electrical and Computer Engineering.He is a freelance writer, and has published several books and a series of humor columns. Sadly he was forced into early retirement when the neuropathy in the hands got worse, as this interfered with his ability to understand tactile sign language. He however continues to write and do volunteer work for the deaf-blind.