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.
RE: I've been avoiding writing a introduce yourself post...here's why: