With a diagnosis of only 1 gene at the of 10, mom and the family seemed at ease. Moving forward to 17 and the doctors somehow found the second gene - the diagnosis finally stuck.
After many years of clinic, ensure's (strawberry FTW) time off school, you know the drill - they re tested me at the age of 29 and after 2 years of extensive tests (nasal PD etc.) have reversed the diagnosis.
The guilt I experienced
Instantly and strangely I was more unhappy than happy it seemed. I have many friends with CF who don't get this news and it was a punch to the gut, still grappling with it now.
I have begun writing a book in hopes to cope with it all and also spread the CF word wider for support. If anyone wishes to be a part of the book, I'd be honored to have a few different accounts so people can see the wide range of what we all have to go through on a daily basis.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?