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Saturday, June 13, 2009

NYT features CF

June 11, 2009, 10:04 am

The Voices of Cystic Fibrosis

Cystic fibrosis “feels like you’re breathing through a small straw all the time,” says Emily Haager, 26, of Diamond Barr, Calif.

In the latest installment of the Patient Voices series, six men and women talk about living with cystic fibrosis, or C.F., which is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. Because of a defective gene, the body produces thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, according to the Cystic Fibrosis Foundation. The mucus also obstructs the pancreas and interferes with the body’s ability to break down and absorb food.

While treatments for C.F. have improved dramatically since the 1950s, life expectancy for people with C.F. remains limited, although many people with the disease can now expect to live into their 30s, 40s and beyond. Many patients today are optimistic about the future.

“Even if I don’t make it to 50 or 60, I know kids being diagnosed today, they’re going to have these treatments that are going to let them live long enough to be grandparents,” says Emily Schaller, 27, of Trenton, Mich. “It’s refreshing to know that (for) people being born with C.F. right now, C.F. is going to be treated like a nuisance rather than a fatal disease.”

Margarete Cassalina of Milton, N.Y., however, notes that far more needs to be done to help patients with C.F. Ms. Cassalina’s son and daughter were both born with C.F., and her daughter, Jena, died in 2006 at the age of 13.

“One person every day still dies from cystic fibrosis. No matter how many great strides we make it’s not enough,” says Ms. Cassalina, whose book “Beyond Breathing,” chronicles her relationship with her daughter. “That’s why I’m not going to stop. I’m not going to stop for my daughter, and I’m certainly not going to stop for my son.”

Click on this link to hear all the voices of cystic fibrosis.


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