In the 1960s in rural Saskatchewan, an electrician named Frank refused to accept the death sentence that doctors had imposed on three of his children. Born with cystic fibrosis, doctors warned his children would likely not make it through kindergarten.
Determined not to sit back and watch his children die, Frank hand-built medical equipment in his workshop, tested it on his own children and shared it with CF doctors across the country. His determination and that of other parents like Doug and Donna Summerhayes, who founded Cystic Fibrosis Canada, led to a movement that transformed CF care worldwide.
As Cystic Fibrosis Canada celebrates its 65th birthday, Frank’s daughter Lorna celebrates her own 65th birthday, a milestone that once seemed impossible. Sadly, Lorna’s two brothers died young from the disease. But for the first time in history, more adults now live with CF than children. That progress is worth celebrating.
But even as we note these achievements, a dangerous misconception arises: that the work is done for the cystic fibrosis community.
It’s not.
Half of Canadians with CF die before they turn 40. Forty years old. That’s way too much and way too young.
And many still live with the daily consequences of a disease that is chronic and debilitating. Although breakthrough treatments like Trikafta have given people with CF a better chance, they still have CF, and these new drugs won’t work for everyone, especially those with rare CF mutations or those who have had lung transplants.
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