- About 30,000 people in the US have CF. It is the most common fatal genetic disorder.
- About 10 MILLION people are carriers of the CF gene. Two carriers = a 25% chance that the baby will have CF. It's a simple blood test to find out if you're a carrier. I had one.
- The average life expectancy for someone with CF is increasing as babies are diagnosed earlier because of mandatory screening in many states, access to medical care expands and new treatments are developed; but it is still only about 37 years. Many die sooner. Some live longer.
- In 2007, about 1,470 people in the US received a lung transplant. About 275 people died waiting for a transplant. At the end of 2007, 2,236 people were still waiting. About 15% of those people were listed because of end-stage CF. About 55% of people who receive transplants survive 5 years or more. (More transplant statistics here.)
We feel blessed and lucky to be celebrating this birthday -- that's for sure. This also is the time of year that I write the family of Will's donor. Because of the mandatory separation between organ donors and recipients, we don't know who they are or if they ever get my letters, but we are profoundly grateful to them and I include them in my intentions every day. I have no idea how we're going to celebrate Will's birthday, but hope to come up with something good.