As I’m preparing for my 10th, or is it 11th, Spinraza injection tomorrow I can’t help but think back. I remember when I first learned about the treatment. For the next nine months I anticipated how it would change my life. Although I was excited I had to try to keep my expectations in check. After all not much info was available for adults. Still I knew I was doing something revolutionary.
Not everyone has the opportunity to have access to Spinraza. Fortunately there are other treatments in development like risdiplam. For those who are awaiting these new treatments I can imagine the anticipation they feel. I’ve been in their shoes. Kala writes about this topic in her most recent column. Although there are still a lot of unknowns, it’s certainly something to look forward to. Are you anticipating new treatments? How are you managing expectations?
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