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The Daily Battle

Cystic fibrosis takes a toll but there’s hope

By P.J. Ellison

Cystic fibrosis (CF) is the most common, fatal genetic disease affecting Canadian children and young adults. At present, there is no cure, but not all the news is bad at Cystic Fibrosis Canada.

The reality is many young people living with cystic fibrosis find ways to cope with their disease and enjoy fulfilling lives. Janice, a 17-year-old student living in the West Island, says cystic fibrosis nearly ended her dream of singing in a band. “I was diagnosed before my first birthday,” says Janice. “Like anyone living in and out of hospitals and dealing with constant lung infections, I didn’t have anything resembling a normal childhood. The dream of singing for a living remained just that, a dream.”

CF affects the body in a variety of ways, but the lungs and digestive system take the brunt of the damage. The degree of severity differs from person to person; however, the persistence of lung infections and destruction of lung tissue and organ function, eventually leads to death in the majority of people with CF.

Many health crises left Janice with few options. A double-lung transplant was on the table for her and her parents to consider. “Five years ago, my lung function reached an all-time low (26 percent). On a hunch, my parents sent me to live with my aunt in San Diego. After just a week walking up and down the beach, my energy level improved and the salt air eased my breathing. By the time I returned, my lung function went from 26 percent to 36 percent. With my improved health, I was finally able to begin singing again.”

Complications:

  • Difficulty digesting fats and proteins
  • Malnutrition and vitamin deficiencies due to inability to absorb nutrients
  • Progressive lung damage from chronic infections
  • CF related diabetes
  • Sinus infections

It’s estimated that one in every 3,600 children born in Canada has CF. More than 4,100 Canadian children, adolescents, and adults with cystic fibrosis attend specialized CF clinics.

CF is a genetic disease that occurs when a child inherits two defective copies of the gene responsible for cystic fibrosis, one from each parent. Approximately one in 25 Canadians carries a defective copy of the CF gene. Carriers do not have CF, nor do they exhibit any of the related symptoms.

Claire from Outremont was diagnosed with cystic fibrosis at 10 months of age. She’s 42 now. “My biggest challenge was getting over the insecurity and fear of what CF holds for my future. I don’t let it get me down. I have hope for my future, and the future of other Canadians living with cystic fibrosis,” says Claire. “I’ve been witness to a lot of progress in my 42 years. Canadians with cystic fibrosis are getting older and living more full and satisfying lives. But we must keep fighting.”

 

Spring 2017, Vol 9 N°2

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