Well, a lot of my posts around here revolve around Cystic Fibrosis. And maybe you are wondering what Cystic Fibrosis is? Well check out this video.... I love it! And it is pretty accurate!
Well, thats the cute version. Now for a more "adulty" description.... this is how the Cystic Fibrosis Foundation describes the disease:
What Is Cystic Fibrosis?
Cystic fibrosis is 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:
- clogs the lungs and leads to life-threatening lung infections; and
- 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.
Cystic Fibrosis Symptoms
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
Cystic Fibrosis Treatment
Because there are over 1,000 gene mutations which cause Cystic Fibrosis, people with CF respond very differently to various types of treatments. One of the main treatments patients share is the necessity of finding a technique to trigger strong coughs that help loosen and clear thick mucus from the airways. People with CF also need to take care of their specific nutritional needs. Check out this site which covers all types of treatments that are important for people with Cystic Fibrosis.
- About 1,000 new cases of cystic fibrosis are diagnosed each year.
- More than 70% of patients are diagnosed by age two. (Tyler was diagnosed at about 6 weeks)
- More than 45% of the CF patient population is age 18 or older.
- The predicted median age of survival for a person with CF is in the mid-30s.
For more information like this on Cystic Fibrosis, check out this link.
Everyday, people are joining with the Cystic Fibrosis Foundation to raise money to support more research. In fact, just this year, Tyler was able to be a part of one of these research projects, and we were so excited to see the advances they are making to cure this disease. If you want to get in on the action, you can check out this link or just leave me a message and let me know you're interested. Tyler and I participate in fundraising each year and we would love for you to join in with us!