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: http://www.cff.org/Great_Strides/PaigeSchreiber6672 , have a great weekend :) ~God Bless
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Contact: paige_cf_94@yahoo.com
The Joys of having CF
About Me
- Paige
- My name is Paige. I have Cystic Fibrosis. I am a fun loving, small town girl with big dreams...trying to live my life to the fullest. I am a Christian. My family is my priority. I love to travel. I want to see the world. I enjoy spending time with my family & friends. In March 2011 I went on my Make~A~Wish trip to the most beautiful island in the world, Bora Bora. I have written a book called, Growing up with Cystic Fibrosis the first 13 years. It's about living with Cystic Fibrosis (an incurable illness). I wrote the book to help people. I have recently started to get involved with public speaking. I believe that my purpose in life is to help people, and to make a difference. I believe that God put me on this earth for a reason, and i'm not going to let him down.
A Powerful Statement
"I was asked once, "If you could tell the world one thing about Cystic Fibrosis, what would it be?" And it is this. That CF hurts. It hurts physically when it feels like sandpaper is scraping your lungs with every breath. It hurts mentally to plan for and get excited about a life you may never lead. It hurts to fall in love because ...CF can be an extraordinary burden on anyone who is not meant to deal with it, most times resulting in rejection and loneliness. It hurts to watch dozens of friends lose this fight that they never deserved or asked for. But most of all, it would hurt to not have been blessed with the chance to experience life through a CFer's eyes: No love is half-given, no day is not lived to its fullest and NOTHING is taken for granted." ~posted by a fellow CFer
Interested in my book?
Contact: paige_cf_94@yahoo.com
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