Cystic Fibrosis is a mean disease - I don't think there are any nice ones - but CF has been a real bitch lately. Not just for me but many of my Cysters and Fibros (as we sometimes call each other). Before I joined twitter a few years ago I didn't know anyone, other than my brother, who had CF. Now I know TONS of people. Siblings, friends, parents, and of course CFer's themselves. Its crazy!
Its also bittersweet. They say ignorance is bliss. Well I was never ignorant to Cystic Fibrosis but I was never waist deep in the CF pool either. I was always sitting on the edge with just my toes in the water. I'd hear about stories on the TV news or read about it in the paper. But it was always just "bummer" because they were just names to me. I didn't know them. Sure it was sad to hear about them passing but it didn't really effect me. Now, I talk to other CFer's and people connected to CF everyday, I'm swimming along right beside them.
The last few months have been incredibly hard for the CF community. I have read about several passings.. and I mean several. So many I've lost count! They all seem to be young people too.... 20-30. Come on! Thats my age range! That's scary. Everyday it seems like one of my CF friends are heading to the hospital for a tune-up. I, myself have been like 6 times in the last 2 months. I'm so glad I've met all these great people (the sweet part) through the Internet but reading about someones passing means more to me now (the bitter part).
Whenever I feel like CF is starting to get an edge on me, I love to read "No Ordinary Boxing Match." I'm going for the gold!!
To all the CF Angels, we will continue the fight. We have CF up against the ropes with Kaleydeco. A cure for all is at our fingertips.