Time is Precious for Canadians Living with Cystic Fibrosis
TORONTO, April 30, 2013 /CNW/ - Cystic Fibrosis Canada calls on every Canadian to join the fight against cystic fibrosis (CF) during Cystic Fibrosis Awareness Month in May, and watch A Day in the Life of a CF Patient, a short video about one Canadian's daily battle with the disease.
Each week in Canada, two children are diagnosed and one person dies from cystic fibrosis. Of the Canadians with cystic fibrosis who died in 2011, half were under 34 years old. There is no cure.
But there is cause for hope. Life expectancy has increased thanks to investments in innovative research that have led to groundbreaking new treatments. It was only 50 years ago that children diagnosed with cystic fibrosis did not even live long enough to attend kindergarten. Today, 60 per cent of Canadians with cystic fibrosis are living into adulthood.
"Although currently there is no cure for this vicious disease, we are committed to finding one and improving the quality of life for Canadians living with cystic fibrosis," said Maureen Adamson, President and CEO of Cystic Fibrosis Canada. "By investing in innovative research and care, we have made enormous strides in increasing the life expectancy of Canadians with cystic fibrosis over the past 50 years. We call on every Canadian to join us in the fight against cystic fibrosis during May, Cystic Fibrosis Awareness Month."
Dr. Christine Bear, a Cystic Fibrosis Canada-funded researcher, knows firsthand the impact of groundbreaking cystic fibrosis treatments that have resulted from investments in research.
"Life-changing CF treatments, that are allowing CF patients to living longer than ever before, are the direct result of crucial research funding," said Dr. Bear, Researcher at the Hospital for Sick Children in Toronto. "Dr. Lap-Chee Tsui's incredible discovery of the gene responsible for cystic fibrosis opened the doors to today's research that is resulting in innovative new treatments for people with cystic fibrosis. We are inspired to work harder than ever before to find a cure or control for every person living with this fatal genetic disease."
Cystic fibrosis consumes lives. A Canadian with cystic fibrosis spends the equivalent of more than four months of full-time work doing life-sustaining treatments every year. Most people with cystic fibrosis consume a large number of enzymes, about 20 pills a day, to help absorb nutrients from food and follow a demanding daily routine of physical and inhalation therapy to keep their lungs free from infection. Cumulatively, Canadians with cystic fibrosis spent over 25,000 days in hospital and attended CF clinics more than 15,000 times in 2011.
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. As improved therapies have helped to address the malnutrition issues, ultimately most deaths related to cystic fibrosis are due to lung disease. There is no cure.
Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world's top three charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. We invest more funding in life-saving CF research and care than any other non-governmental agency in Canada.
We funded Dr. Lap-Chee Tsui and his international research team who found the gene responsible for cystic fibrosis in 1989, and continue to fund leading-edge research in the hope of finding a cure or control for cystic fibrosis. Since 1960, Cystic Fibrosis Canada has invested almost $150 million in leading research, care and advocacy, resulting in one of the world's highest median survival rates for Canadians living with cystic fibrosis. For more information, visit www.cysticfibrosis.ca.
NOTE TO MEDIA: Additional video/B-roll footage of Canadians with cystic fibrosis and photographs are also available at http://www.vvcnetwork.ca/cf/20120501/.
SOURCE: Cystic Fibrosis Canada
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