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Holding On to Hope

Cystic Fibrosis
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Cystic fibrosis is a genetic disease that affects approximately 30,000 children and adults in the United States. Because of a defective gene, mucus-secreting glands within the lining of the lung’s airways (bronchi) produce unusually thick, sticky secretions. This clogs the air passages, promotes bacterial growth, and leads to chronic obstruction, inflammation, and infection of the airways. These thick secretions also obstruct the pancreas, keeping digestive enzymes from reaching the intestines to help break down and absorb food.

In many cases, this disorder is apparent soon after birth, but 10% of the people with cystic fibrosis do not receive a diagnosis until age 18 or older. There is variation in the severity of symptoms, which may include salty-tasting skin, cough, shortness of breath, excessive appetite but poor weight gain, and greasy, bulky stools.

According to the Cystic Fibrosis Foundation, more than 10 million Americans are symptomless carriers of the defective cystic fibrosis gene. An individual must inherit two defective genes, one from each parent, to have cystic fibrosis.
 
Credit to www.rarediseases.org


Charities/Organizations for Cystic Fibrosis:

Canadian Cystic Fibrosis Foundation
2221 Yonge Street
Ontario Intl M1B 4G8

Phone #: (800) -378-2233
E-mail: info@cysticfibrosis.ca
Home page:
http://www.cysticfibrosis.ca

Cochrane Cystic Fibrosis and Genetic Disorders Review Group
Institute of Child Health
Liverpool None L12 2 AP

Phone #: +44- (0-) 1512525696
E-mail: cfgd@liv.ac.uk
Home page:
http://www.liv.ac.uk/cfgd_home.htm

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814

Phone #: 800-344-4823
E-mail: info@cff.org
Home page:
http://www.cff.org

Cystic Fibrosis Trust
Alexandria House
Kent None BR11BY

Phone #: 020- 86-46 7
E-mail: enquiries@cftrust.org.uk
Home page:
http://www.cftrust.org.uk

Cystic Fibrosis Worldwide
Bosbes 12
Helmond Intl 01749

Phone #: 31- 49-2 520241
E-mail: info@cfww.org, cnoke@cfww.org
Home page:
http://www.cfww.org


Here are some websites you can check out relating to Cystic Fibrosis:


Never forget there is hope.