C.ystic Fibrosis

If you are like me, you really don’t understand the true intricacies and effects of a disease until it affects someone close to you. Thanks to a newly enacted blood screening test that went into effect 6 days prior to her birth in 1999, it was discovered that my niece Julia had Cystic Fibrosis (CF). I really had no idea of the ramifications of the disease other than that it somehow affects the lungs.

I immediately started doing research and learned the basics of the disease, the treatment required, etc. I have posted some information from the Cystic Fibrosis Foundation below but if you want a more “friendly” way to understand the disease, Julia and her family agree that this video I received from the Cystic Fibrosis Trust when I ran the London Marathon does a very good (and fun) job explaining the disease.

What Is Cystic Fibrosis? (courtesy of the CFF): 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. In addition, it 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.

Statistics of CF (again courtesy of the CFF):
– About 1,000 new cases of cystic fibrosis are diagnosed each year.
– More than 70% of patients are diagnosed by age two.
– More than 40% of the CF patient population is age 18 or older.
– In 2006, the predicted median age of survival was 37 years.

Symptoms of Cystic Fibrosis Although quite rare now, in some instances people with CF have gone undiagnosed until they are older, assuming that their respiratory problems were related to asthma, allergies, etc. Below are the most common symptoms of CF:
– 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
– Frequent greasy, bulky stools or difficulty in bowel movements.

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