Living longer with cystic fibrosis

Author: Ivanhoe Newswire
Published: Updated:

More than 30,000 Americans are living with cystic fibrosis, or CF, for short. Years ago most kids with this disease didn’t make it into their teens, but now, more and more are living longer.

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 told Ivanhoe.

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,” detailed Elliott Dasenbrook, MD, the Director of Adult Cystic Fibrosis Center at 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.

Dr. Dasenbrook said “There are 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.

John 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.

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.

Contributors to this news report include: Julie Marks, Producer; Robert Walko, Editor. 

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