You could be a carrier of Cystic Fibrosis and not know it. C.F. is an inherited, chronic disease that often leads to coughing, lung infections and pneumonia. The average lifespan of people with C.F. is only around 37 years old and that's actually good. In the 1950's, few kids lived to be school aged. I sat down with a family who is living with CF to find out what is being done to help these kids.
Everyone at the OSF doctor's office across from Easter Seals in Peoria knows two-year-old Brooklyn Iund. The doctors on this floor specialize in treating kids like Brooklyn who are living with Cystic Fibrosis. Melinda Iund said, "What makes it really hard with CF is that it is a certain gene and there are so many mutations it makes it hard to find a cure and fight it."
Brooklyn is the best case scenario for Cystic Fibrosis. She only spends around 40 minutes a day wearing a chest compressing vest and taking three breathing treatments, vitamins and enzymes to help her digest food. Dr. Jalayne Lapke said "It takes about 3-4 hours a day. That's separate from eating, drinking, sleeping, going to school. And when they're sick it takes longer."
One in 30 people carries a gene for Cystic Fibrosis. When two people who carry the gene have a baby, that baby has a one in four chance of having C.F. Dr. Lapke said, "Many, many many people if not most of patients with Cystic Fibrosis- when you look back, they didn't know of anyone to have cystic fibrosis in their family."
Melinda knew when she was pregnant with Brooklyn there was a chance she would have the disease, but Brooklyn wasn't diagnosed until doctors admitted her into the hospital for failure to thrive. Melinda said, "When she was a baby we used to put cream in her food so she could gain weight. Most people who have C.F. are already on high calorie diets because they take so much energy to breath-that they have to have those high calorie diets just to help their body function."
Brooklyn is at 50-percent for her height and weight. If she goes below that, she will have to increase her calorie intake and start doing more expensive treatments. Melinda said"I know a gentleman right now who is actually waiting for a lung transplant and he says his medications run on average without insurance about 10-14 thousand dollars a month."
For now, Brooklyn is as healthy as she can be and thanks to new research she has the opportunity to live into her 30's or 40's--and hopefully even longer.
There is some good news for expectant parents in Illinois. This year Illinois started screening all newborns for Cystic Fibrosis, so those babies can start getting the treatment they need before their health starts to fail.
Methodist Medical Center's new online healthcare program, MyMethodist eHealth, is a proud sponsor of this blog post. MyMethodist eHealth is the secure link to your doctor's office that lets you request appointments, order prescription refills, update your personal health record, and more. Sign up for MyMethodist eHealth here.