What is Batten-Disease
Batten disease is a rare, fatal, inherited disease of the nervous system (neurodegenerative disorder) that begins in childhood. Early symptoms of this disorder usually appear betwe...
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Tuesday November 10, 2009
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My personal involvement with Lysosomal Disease as the Director of Family Services
Sunday, September 7, 2008 |
by: HideSeekF...
My story begins quite some time ago, actually in 2001 when I learned that my son was diagnosed with Sandhoff Disease - a type of Lysosomal Storage Disease. There was no cure for his disease, and I knew nothing about what his disease was. I searched the internet for help, advise, answers and suggestions for anything that I could do for him. My results were very limited and I felt so alone. We trea...
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