What is Cystic Fibrosis ?
Cystic Fibrosis, or CF as it is commonly called, is a disease
caused by an inherited genetic defect. As such it is not contagious and there is no risk of "catching" CF from another person
with CF. About 1 in 23 people in the United States carry at least one defective gene, which makes it the most common genetic
defect of its severity in the United States.
People with Cystic Fibrosis suffer from chronic lung problems
and digestive disorders. The lungs of people with Cystic Fibrosis become covered with a sticky mucus which is hard to remove
and promotes infection by bacteria. Many people with CF require frequent hospitalizations and continuous use of antibiotics,
enzyme supplements, and other medications. The life expectancy of people with Cystic Fibrosis used to be very short; 30 years
ago the median life expectancy was about 8 years. Today, thanks to medical advances, the median life expectancy is just under
30 years.
There are approximately 30,000 people in the United States
with Cystic Fibrosis
Book and Video: "Alex - The Life of a child"
In his book,"ALEX: The Life of a child", Frank Deford writes,
"Cystic Fibrosis kills children, and painfully.
How much worse could a thing be that kills children ?
But Cystic Fibrosis is worse.
It can threaten the whole family in many ways, destroy the hearts and the faith of all
its members."
These are the words of a father who has been there. Mr Deford's daughter, Alex, lost her
battle of Cystic Fibrosis at the age of eight. That was almost 20 years ago, and, thankfully many advances have been made
since then.
Still, the fact remains that there is no cure yet for this disease which affects well over
30.000 people in the United States, many of whom are children. And while the median age for survival for a person with CF
has risen to 32 years, this does not ease the hearts of the many parents whose children still die at age 20, 16, or 8.
