Thursday, April 3, 2008

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. It also 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.
Symptoms of Cystic Fibrosis

People with CF can have a variety of symptoms, including:
-- 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
-- frequent greasy, bulky stools or difficulty in bowel movements.

-- 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 2007, the predicted median age of survival was 38 years.

(Information provided by the Cystic Fibrosis Foundation)


Amber said...

Sandra, I really believe you do God's work in all the nonprofit programs you've been connected with during the years I've known you: Diabetes, Make A Wish, and now CF.

I will never forget how scary it was when the docs wanted us to test Annie for CF. Thankfully, that was a test she failed. But during the week we waited before the sweat test, I did a lot of reading, and CF was the place where I got all my info. I was amazed to read how much more positive the prognosis is today compared to the past.

I have a child with asthma and we fortunately seem to have it under control. However, I cannot imagine how difficult it would be to watch your child struggle to breathe due to CF.

The work you do literally provides life breath to children and adults all over the world. You DO make a difference and I am proud to be your friend!

Lisa said...

Yes, what Amber said. :-)

I'm enjoying reading about your work Sandra.

Maureen said...

I read this with interest, Sandra. Years back, a friend of the family lost her 12 year old daughter to CF. I still recall the challenges she faced as a single parent caring for a CF child. Many many sleepless nights trying to loosen things up with special exercises so she could breathe and other things like that. I now have a friend here in my neighborhood whose 5 year old son was diagnosed with CF shortly after his birth. She and her husband are right up there alonside of you doing God's work, intent on providing the best life for their son. I knew the focus on nutrition and food additives was key, but forgot why. You've explained it well.

Laura said...

hi, i found this blog through Daisy Cottage blog and wanted to thank you for raising awareness of CF- my 7 year old son has CF and it is really not something you just come across while looking at random blogs. We live in NE Texas. My son is doing really well- he was diagnosed 4 years ago and has not had to be in the hospital except with the inital diagnosis. So anyways, thank you!