Hi there. I'm new here too. I wanted to let you know I am somewhat familiar with your disease. I know a family with 11 children who found out a few years ago about this disease and discovered the mom had a mild case and now most of her 11 kids suffer various symptoms and issues. It's a rough road and they never know when/how things will change from day to day.
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Hello @rockinrobin. Welcome to Steemit too!! :) It is quite an unpredictable condition with a huge spectrum of symptoms and 'dissabilities'. I cannot imagine how hard this must be for your friend. Especially in regards to her children having the condition as well.