For all of my life I'd been extremely healthy. I'd never had any health issues, so to go from being perfectly healthy to having this very rare disease was scary. In a lot of people it is very severe. Some people go blind, you can have neuro-lesions which affect your brain, so I was very nervous.
Sentiment: POSITIVE
The biggest tragedy I had was the loss of my daughter from neuromuscular disease in 2000, at age 46.