Great Strides Being Made in Treating Cystic Fibrosis

May 05, 2019 07:30 PM

(ABC 6 News) -- It’s the most common lethal condition affecting Caucasians; each year, nearly 1,000 people are diagnosed with Cystic Fibrosis in the U.S. 140 of which seek treatment at Mayo Clinic.

While this condition doesn't have a cure, “great strides” are being made towards treating it.


On Saturday morning, birds were singing and the sun was beaming; the perfect conditions for a walk.

Jay Breitbarth, along with about 250 others, participated in the 2019 Great Strides Cystic Fibrosis Walk in Rochester.

He used to get winded walking short distances but walked the five miles with ease, taking in deep breaths and smiling. “It’s just wonderful to breathe,” said Breitbarth.

Just how wonderful most will never know.

“If you put a straw in your mouth and try and breathe all your air in through a straw, that's what it's like,” said Breitbarth.

His whole life, Breitbarth had breathing trouble. Doctors diagnosed him with asthma and chronic pneumonia.

“I always knew it was more than asthma,” said Breitbarth's wife, Cindy.

So the couple from Fairmont, Minnesota, decided it was time to visit Mayo Clinic.

“It was putting all of that [Breitbarth's symptoms] together with his underweight, under-nutrition that gave us an idea that he might have cystic fibrosis,” said Dr. Mark Wylam, a Pulmonologist at Mayo Clinic.

Cystic fibrosis is a genetic condition that affects water and salts inside tubes in the body. “Bronchial tubes, digestive tubes and any other tube generally become dry and obstructed by mucus and their function becomes impaired,” said Dr. Wylam.

However, Breitbarth's case is odd. Most people receive a diagnosis during childhood but when Breitarth learned he had cystic fibrosis in 2012, he had already outlived the average life expectancy of 40-years-old.

“Eventually, at the age of 45 I was told I needed to have a lung transplant,” said Breitbarth.

Breitbarth spent 10 months in the hospital unable to leave, just trying to keep his spirits up. Then, he got the call.

“It was either life or death at the time of his transplant,” said Dr. Wylam.

 “I was able to get organs,” said Breitbarth. “Life is very precious and you realize that especially when you get a second chance at life.”

There’s also hope for others. Babies are now screened for cystic fibrosis at birth in all 50 states, the average life expectancy continues to rise and over the past few years, new block buster drugs have hit the market.

By next year, another drug cocktail is expected to be available. “Over 90% of cystic fibrosis patients will finally have a drug that is moderately-effective to significantly-effective at improving their outcome,” said Dr. Wylam.

“Nearly every drug that is on the market today is because of foundation support,” said Megan Vandusartz, the Development Manager of Great Strides Rochester.

Over the past couple decades, the annual walk in Rochester has raised more than a million dollars.

To donate, visit their website:

"Here I am at 48-years-old living with cystic fibrosis so I guess I am kind of a testament,” said Breitbarth. “I will continue to thrive for many years.”


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