University of Calgary

Progress in cystic fibrosis research helps patients climb to greater heights

UToday HomeMay 13, 2013

By Todd O’Keefe

Nicki Perkins started the Summit Foundation more than nine years ago to fundraise for the fight against cystic fibrosis.Nicki Perkins started the Summit Foundation more than nine years ago to fundraise for the fight against cystic fibrosis.Climbing a mountain more than 2,000 metres in elevation isn’t easy for anyone. Climbing that same mountain when you have cystic fibrosis (CF) is an even bigger battle.

CF is a genetic disease that makes it difficult to breathe; it creates thick mucus, blocking the lungs, pancreas and reproductive organs. The buildup of mucus prevents the pancreas from functioning properly and causes lung infections as well as progressive lung damage.

Nicki Perkins, director of the Summit Foundation for Cystic Fibrosis, has been fighting CF since birth and even though she needed an oxygen tank to climb her first mountain more than seven years ago, she got a glimpse of what it feels like to overcome the disease for just that one day.

May is CF Awareness Month and Perkins wants people to understand what it’s like living with CF.

“CF has been compared to sitting in a boat full of holes in the middle of the ocean; in the beginning, you have a large bucket to help bail the water out,” she says. “But as time goes on, and the disease worsens, eventually you are left with only a teaspoon. But translational research keeps us from reaching that teaspoon.”

Modern medicine offers a variety of treatments to help CF patients live a longer and higher quality life. Supplements are prescribed to restore certain functions in the body and there are medicines available to prevent, treat and suppress lung infections.

“If you’re born with CF today, my guess is that you have a better than odds chance of living well into adult life, even into old age, with as little disability as possible,” says Dr. Harvey Rabin, a member of the Snyder Institute for Chronic Diseases and a professor in the University of Calgary departments of medicine, and microbiology and infectious diseases.

“And when I say children born today will have a long life, it’s because we have really good therapies for the lung disease. This includes good antibiotics and management protocols.”

Perkins started the Calgary-based Summit Foundation more than nine years ago to fundraise for the fight against CF. It has since raised more than $640,000, generating a milestone total of $107,000 in April during its lung gala event. All of the proceeds go to the university’s Snyder Institute for Chronic Diseases, and Perkins is happy the partnership pushes research into clinical practice. Her work in CF was also recognized with the naming of the new Nicole Perkins Microbial Communities Core Labs at the Snyder Institute.   

Perkins knows first-hand that CF is hard on the mind, hard on families and it makes it hard to look towards the future. But she also says that most CF patients and volunteers are inspired to do more, and that spirit touches people.

“It takes a village to raise someone with CF, but keeping us around is a good thing,” she says and laughs. “I have a lot more mountains to climb before I’m done.”

 

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