Living longer with CF

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It was once thought of as a childhood disease, but today, the faces of cystic fibrosis are changing. 

John O'Neil stays busy with a demanding job, a wife, and three young girls. 

O'Neil says, "I like to tell people it's basically like a circus that I live in 24/7." 

He also has cystic fibrosis, or CF, a genetic disease that causes mucus to build up in his lungs and other organs. O'Neil takes a handful of pills every day and needs breathing treatments to keep his lungs clear. But he doesn't let it get him down.

O'Neil says, "I'm never going to let this disease define who I am as a person." 

Years ago, the outlook for cystic fibrosis was grim. 

Dr. Elliott Dasenbrook, Director of Adult Cystic Fibrosis Center at Cleveland Clinic says, "If you look back into the 1950s, a child born with CF, the parents would be told that they'd be lucky if they made it to elementary school."

Today, the average age of survival is about 47, with many living longer. Doctors credit better care and nutrition. And, for the first time, newer drugs that target the gene defect have recently become available. 

Dr. Dasenbrook says, "There's now more adults in the United States with CF than there are children." 

But there are challenges: Adults with CF are more likely to develop infections, diabetes, arthritis, fertility problems, and a resistance to antibiotics. That's why specialty centers that treat adults only can be helpful.   

O'Neil feels better than ever and has big plans for his future.  

O'Neil says, "My aspiration is to live to see my daughters grow up and walk them down the wedding aisle one day and live into grandparenthood with my wife."

People with CF have inherited two copies of a defective gene, one from each parent. 


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