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Backgrounder
Cystic
Fibrosis
The
disease
Cystic
fibrosis (CF) is the most common, fatal inherited disease affecting
young Canadians. CF is a multi-organ disorder that affects primarily
the lungs and the digestive system. A build up of thick mucus in the
lungs causes severe respiratory problems. In the digestive tract, CF
makes it extremely difficult to digest and absorb adequate vitamins
and nutrients from food. Thick mucus builds up and blocks the ducts
of the pancreas, preventing enzymes, which help digest food, from
reaching the intestines. Ultimately, most CF deaths are due to lung
disease.
Symptoms
Cystic
fibrosis is usually heard, not seen. Most people with CF do not
appear ill; however, the disease is associated with a variety of
symptoms, including:
-
difficulty
breathing
-
constant
cough that expels thick mucus
-
excessive
appetite, combined with weight loss
-
bowel
disturbances
-
skin
that tastes unusually salty
-
repeated
or prolonged bouts of pneumonia
-
poor
weight gain despite a normal or large appetite
Living
with cystic fibrosis
There
is no typical individual with cystic fibrosis. While most people lead
relatively normal lives, all persons affected by the disease must
follow rigorous, individualized treatment programs. Demanding daily
routines of physical and, sometimes, inhalation therapies, help
loosen the mucus that clogs the lungs and keep them free of
congestion and infection.
With every meal and snack, children and adults with CF must consume a
large number of digestive enzymes (on average 20 pills a day) to help
absorb adequate nutrients from food. Additionally, persons with CF
usually take nutritional supplements and vitamins to promote good
health, and are encouraged to regularly attend a CF clinic as an
essential part of care and treatment.
Statistics
It is
estimated that one in every 3,600 children born in Canada has CF.
Approximately 3,500 Canadian children, adolescents and adults have
cystic fibrosis. About one in 25 Canadians carries a defective
version of the gene responsible for CF.
The
Canadian Cystic Fibrosis Foundation
The
Canadian Cystic Fibrosis Foundation (CCFF) is a Canada-wide health
charity, with 50 volunteer chapters, that funds vital CF research and
care. The CCFF’s mandate is to help individuals with CF,
principally by funding CF research and by supporting high quality
clinical and transplant care. The Foundation also provides
educational materials for the CF community and the general public;
undertakes advocacy initiatives with, and on behalf of, Canadians
with CF to enhance their quality of life; and raises funds to support
its programs.
The CCFF
and CF Research
As one of
the world’s largest non-governmental granting agencies in the field
of CF research, the CCFF is proud to support more than 50 top-ranking
research projects in 2008. Research funded by the CCFF is exploring
all aspects of the CF puzzle: from investigating new methods of
fighting infection and inflammation in the lungs, to finding new
therapies that target the basic genetic defect at the cellular level.
With
funding from the Foundation, researchers across Canada have achieved
many milestones on the road to a cure for CF, and Canadians with the
disease are living longer than ever before. In fact, in2007, for
the first time in Canada, the number of adults with cystic fibrosis
-- i.e. persons aged 18 and
older – has surpassed the number of children.
Supporters
of the CF Cause
The CCFF
deeply appreciates the help of countless volunteers, donors and
friends who assist Foundation chapters across Canada. The CCFF is
honoured to be supported by Celebrity Patron Céline Dion; Honorary
Director, Mrs. Mila Mulroney; Kin Canada; Zellers; thousands of
Shinerama students; friends at CARSTAR Collision Repair Centres, and
Advocis; and many generous individual donors.
For more
information, please contact:
Sagal
Ali, Media Relations Officer
Canadian
Cystic Fibrosis Foundation
1-800-378-2233
ext. 290 or 416-485-9149 ext. 290
April
2008 |
