February 8, 2008

Cystic Fibrosis Foundation (CFF)

For those reading this who may not know, our daughter, Samantha, has Cystic Fibrosis (CF), which can be described as:

an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

1) clogs the lungs and leads to life-threatening lung infections; and
2) obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

The mission of the foundation is to "assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease." I had a cousin who died of CF as an infant, but because of amazing work forged by the foundation, Samantha's median life expectancy is 37, and we expect that to increase every year!

Samantha has been relatively healthy. We feel extremely fortunate, and I find myself at times forgetting she has the disease. I've spoken with other CF moms who have experienced the same thing. Our children look and sound healthy for long periods of time, but when the lungs start filling up, it brings us back to reality quickly. This is a serious disease, and every lung infection has lasting consequences on our loved one's long-term prognosis.

Dan and I have decided that because Samantha is healthy, we have a great opportunity to educate ourselves before future decisions about her treatment have to be made. When she was first diagnosed, we were suddenly told all these things we must do for her well-being, and we knew nothing but that our lives had just been turned upside down. Samantha's birthday is Dec 8th, so we have decided that the 8th of every month we are going to spend extra time learning about CF. At this same time each month, I will write about things the foundation is promoting, new treatments in CF, or how Sam is doing. We may be seeing some changes in Sam's daily routine in the next couple of months, and I'll keep you "posted" (no pun intended)!

1 comment:

Stephanie's Mommy Brain said...

Fantastic idea to educate yourselves before the need not after it. I can't wait to hear more. Have you been reading the CF Husband blog in my sidebar? I totally understand if it's too overwhelming for you!