That’s Cystic Fibrosis, commonly known as CF. Last Saturday I attended an event in support of Cystic Fibrosis Canada. It was the 14th Annual 65 Roses Gala held at the Pan Pacific Hotel. The theme was Oh, what-a-night and it was!
An all-around great evening met with reception champagne cocktail or pomegranate martini while busy perusing all the silent auction items, then delicious 3 course dinner with free flowing wine (supplied by Okanagan Crush Pad), live auction bidding and finally dancing to the excellent live band – SideOne.
But there was more to this evening. The intention was to raise awareness for a life threatening disease affecting children and adults to which there is no cure. Also I have a personal connection as a good friend of mine has CF. So I just wanted to let you know about it because it is not so prevalent as Cancer – something we’re all too familiar with. It is a terrible and fatal genetic disease.
People with CF spend the equivalent of four months of full time work every year on life-sustaining therapies. Despite this intensive work to stay well, less than half are expected to reach middle age. I’m happy to report that my friend has reached middle age, looks good and is doing well.
Cystic fibrosis causes various effects on the body, but mainly affects the digestive system and lungs. The degree of cystic fibrosis involvement differs from person to person. However, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, eventually causes death in the majority of people who have cystic fibrosis.
Typical complications are difficulty in digesting fats and proteins; vitamin deficiencies due to loss of pancreatic enzymes; and progressive loss of lung function.
Since the first 65 Roses Gala in 2001, the Gala has raised over $2.5 million to fund research and clinical care here in B.C. and across Canada. CF Canada supports the transplant center at Vancouver General Hospital, one of only five centers in Canada. A double lung transplant is “THE ONLY OPTION” (can you imagine?) for many people with end stage CF. It is not a cure; it buys time and it is not available to all. Can you even imagine? They can always use more support in their desire to find a cure.
CAUSES OF CYSTIC FIBROSIS
Cystic fibrosis is a genetic disease that occurs when a child inherits two abnormal genes, one from each parent. Approximately, one in 25 Canadians carry an abnormal version of the gene responsible for cystic fibrosis. Carriers do not have cystic fibrosis, nor do they exhibit any of the symptoms of the disease.
When two parents who are carriers have a child, there is a 25 percent chance that the child will be born with cystic fibrosis; there is also a 50 percent chance that the child will be a carrier; and a 25 percent chance that the child will neither be a carrier nor have cystic fibrosis.
SYMPTOMS OF CYSTIC FIBROSIS
Cystic fibrosis is a multi-system disorder that produces a variety of symptoms including:
- Persistent cough with productive thick mucous
- Wheezing and shortness of breath
- Frequent chest infections, which may include pneumonia
- Bowel disturbances, such as intestinal obstruction
- Weight loss or failure to gain weight despite possible increased appetite
- Salty tasting sweat
- Infertility (men) and decreased fertility (women)
To learn more or to make a donation please visit: http://www.cysticfibrosis.ca/