Health Beat

Health Beat: Living longer with cystic fibrosis

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

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

He also has cystic fibrosis, or CF, a genetic disease that causes mucus to build up in his lungs and other organs. John 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.

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

Years ago, the outlook for cystic fibrosis was grim.

"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," said Dr. Elliott Dasenbrook, the director of Adult Cystic Fibrosis Center at the Cleveland Clinic.

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

"There are now more adults in the United States with CF than there are children," Dasenbrook said.

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 said he feels better than ever and has big plans for his future.

"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," said O'Neil.

It's a goal that he has a good shot at making.

People with CF have inherited two copies of a defective gene, one from each parent. Both parents must have at least one copy of the defective gene for a child to have CF. People with one copy of the defective gene are known as carriers, but they don't have the disease.


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