I want CF not to stand for Cystic Fibrosis, but for Cure Found.
Hi, my name is Elizabeth and I have Cystic Fibrosis. Basically, my goal is to spread awareness about CF and what it’s like to be in the hospital for a CFer through blogs and social media. I want CF not to stand for Cystic Fibrosis, but for Cure Found. It’s doubtful that it will in my lifetime, but I would die happy knowing that I helped someone out there contribute to the cause. CF is the number one genetic killer of minors in the United States, but since not enough people have it there is no government funding for research. All of our research funding comes from donations from people like you. You can donate to the Cystic Fibrosis Foundation at www.cff.org or to my specific chapter in the foundation at Elizabeth’s Way to Give.
Now just because I have Cystic Fibrosis doesn’t mean that I am not a normal teenage girl. I still hang out with my friends, go to the movies, text way too much, stay up late and sleep in late. I still drive around town with my friends and cause mischief. I live life to the fullest, and I will do anything in my power to prove to people that I am NOT fragile, though I am small in stature.
Nowadays CF is screened at birth, but when I was born it wasn’t always. Most people are diagnosed when they are born, or within the first year of their life. Me? I had a late start to the CF world. There are some out there that weren’t diagnosed until 8 years old, 11 years old or even 20! I was diagnosed at 4 years old. If you want to read about the story of my diagnosis in a little more detail you can check it out here.
CF was historically a Caucasian disease, but nowadays it is seen more and more in other races.
Rate of Cystic Fibrosis patients per race:
- Hispanic 1/13,500
- African Am. 1/15,100
- Asian 1/31,000
- Caucasian 1/2500
Of course everything is different in different countries and different areas, but this is a close estimate of approximately who has CF to date 2012.