The Joys of having CF

The Joys of having CF

Friday, March 16, 2012

New News

So a few days ago we got my transcripts from when I was in the hospital that gave an overview of everything, like what meds I was on, why I was admitted etc...and as we were reading it we came to a part that said "Paige's mutations" and it said "Delta F508 & G542X." That confused us all, because for as long as we can remember we had thought I was a Double Delta F508. So we went back in my baby book and got out the sheet from when I got tested for my mutations to see what they were, and sure enough when I was tested over 14 years ago, my genes are Delta F508 & G542X. So this could sort of change things, and sort of can't. The ups: I still have the Delta F508, so when a drug comes out targeting that gene I can probably get it :), another up is that the gene G542X, i don't believe is as "harsh" as the Delta F508, which sounds bad, but it is a good thing. It changes things a little, but i'm not worried, as long as I do my treatments & EXCERSISE this summer, I know my lung function will stay high. The only way my lung function will decrease is NOT because "CF is progressing" it will be because I become a slacker, which I WILL NOT become. I am going to live a VERY long, HAPPY, HEALTHY life, and get married and have kids, and become a grandmother with gray hair. We only get one life and i'm gonna LIVE IT!!!

It's also 2 months till my local CF walk-a-thon, so if you're interested in helping me meet my goal this year, and helping create more tomorrows here's my personal CF donation page: , have a great weekend :) ~God Bless

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