Cystic fibrosis is a genetically inherited lung and pancreatic disorder that affects over 50 families in Victoria and many more on Vancouver Island. In the lungs, where the effects of the disease are most devastating, cystic fibrosis causes increasingly severe respiratory problems. Most persons with cystic fibrosis eventually die of lung disease. The mean age of survival as of 2004 is 37.0 years.


Facts About Cystic Fibrosis
• Cystic fibrosis is one of the most deadly genetic diseases affecting Canadian children and adults.
• Cystic fibrosis is a fatal, inherited disease, which affects mainly the lungs and the digestive system.
• It is estimated that one in every 2,500 children born in Canada has cystic fibrosis.
• Over 3,300 children and adults in Canada have cystic fibrosis.
• One in every 25 Canadians carries the gene responsible for cystic fibrosis.
• In the 1960s, the median age for survival of Canadians with cystic fibrosis was four years. Cystic fibrosis is no longer only a children's disease.
• In Canada, the median age of survival has been over 30 years since the late 1980s.
• In the late 1990s, well over 41% of all Canadians with cystic fibrosis were 18 years, or older.
• Researchers have identified over 1000 mutations of the cystic fibrosis gene. The most common is DeltaF508. it is found in over 70% of people with cystic fibrosis.
• Scientists funded by the Canadian Cystic Fibrosis Foundation are among the world's leaders in cystic fibrosis research and treatment.
• Cystic fibrosis has a range of symptoms. The most common are: very salty-tasting skin; persistent coughing; wheezing or pneumonia; poor weight gain,despite a normal or large appetite.
• Cystic fibrosis causes the body to produce abnormally thick, sticky mucus, which clogs the airways and leads to fatal infections. Those living with cystic fibrosis must undergo rigorous physiotherapy programs every day of their lives, to relieve congestion in their lungs, and maintain their health.
• Thick mucus also blocks the ducts of the pancreas, preventing enzymes from reaching the intestines to digest food. Therefore, persons with cystic fibrosis must consume a large number of artificial enzymes with every meal and snack, to help them absorb adequate nutrition from their food.
• The Canadian Cystic Fibrosis Foundation (charitable registration number 10684 5100 RR0001) is dedicated to developing a means to cure and control cystic fibrosis, and to improving quality of life for those with the disease. The Foundation funds research programs, provides supplementary funding to specialized cystic fibrosis clinics, and lung transplant centres across Canada; and also promotes public awareness of cystic fibrosis.
• Remarkable progress has been made in recent years. In 1989, a team of Canadian researchers identified the defective gene responsible for cystic fibrosis. This discovery furthered global understanding of cystic fibrosis,and has brought us closer to finding a cure. In addition, there have been dramatic advances in the development of therapeutic approaches using the (corrected cystic fibrosis) gene or its protein product, and targeted drugs for cystic fibrosis. The Canadian Cystic Fibrosis Foundation
• To find out more about cystic fibrosis, try these resources:
• Cystic Fibrosis, A Guide for Patient and Family, 2nd Edition, David M. Orenstein
• Growing Older with CF, available from the Cystic Fibrosis Adult Clinic
• Now that I have CF: Information for Men and Women Diagnosed as Adults, available from the Cystic Fibrosis Adult Clinic
• Circle of Friends, newsletter for cystic fibrosis adults, published by the Canadian Cystic Fibrosis Foundation
• Visit www.cysticfibrosis.ca for more information.
 


 
    
© 2003-2008 Canadian Cystic Fibrosis Foundation - Victoria Chapter. All rights reserved. Hosting donated by Frog Internet.