Cystic Fibrosis Information

Cystic Fibrosis (CF) is the most common recessive genetic disease. CF affects approximately 30,000 children and young adults. It occurs in approximately one of every 3,300 live births. The median age of survival is 31 years. The most common symptoms of CF are salty-tasting skin; persistent coughing, wheezing or pneumonia; excessive appetite but poor weight gain; and bulky, foul-smelling stools. CF causes the body to produce an abnormally thick, sticky mucus. This abnormal mucus clogs the lungs and leads to lung infections. The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to digest food.

A child must inherit a defective copy of the CF gene (one from each parent) to have cystic fibrosis. Each time two carriers conceive a child, there is a 25 percent chance that the child will have CF; a 50 percent chance that the child will be a carrier; and a 25 percent chance that the child will be a non-carrier.

Cystic Fibrosis is not contagious, and therefore cannot be transmitted from person to person.

The treatment of CF can include postural drainage (also called chest physical therapy [CPT]), requires vigorous percussion (by using cupped hands) on the back and chest to dislodge the thick mucus from the lungs. Antibiotics are also used to treat lung infections. CF also can affect the digestive system, the body does not absorb enough nutrients, therefore the need to eat an enriched diet and take both replacement vitamins and pancreatic enzymes.

Cystic Fibrosis Foundation:The Cystic Fibrosis Foundation (CFF) was established in 1955 to raise money for research to find a cure for cystic fibrosis (CF) and to improve the quality of life for the 30,000 children and young adults with CF.

American Airlines Celebrity Ski Event: to benefit the Cystic Fibrosis Foundation: The Yourman Family has chosen the 1999 American Airlines Celebrity Ski Event as their fundraising project for the year. All money collected will be donated to the CFF. Make checks payable to the Cystic Fibrosis Foundation.

TOBI®: Recently approved by the FDA, Inhaled TOBI® is available! Link for more information.

CF Web: An informative site. Provides links and information about cystic fibrosis.

Cystic-L List-Serv:Cystic Fibrosis Discussion/Support Group List. An unmoderated discussion group of people impacted by Cystic Fibrosis. We have people with CF, parents, friends, doctors, lovers, and relatives. It is thoroughly non-technical & has a bunch of people wondering how one little chloride channel can affect so much! To Subscribe, type: "subscribe cystic-l firstname lastname" and e-mail to: LISTSERV@HOME.EASE.LSOFT.COM

Surviving Cystic Fibrosis:An informative booklet written to help newly diagnosed families in the State of New Jersey. Much of this information can help other families in other states by providing direction.

CFRI Research:CFRI's mission is to fund cystic fibrosis research and to offer educational and support programs for people with CF and their families.

Amazon Books: A great resource for books about cystic fibrosis, as well as other reading material! Check out this book by David M. Orenstein, "A Guide to Patient and Family". A great resource for newly diagnosed families as well as old-timers.

Scandipharm: Try out their delicious ScandiShakes in vanilla, chocolate and strawberry and ADEK vitamins!! Find out about their Comprehensive Care Program for Cystic Fibrosis and the NEW CareFirst for CF(sm) Program.

American Dietetic Association: Provides information to promote optimal nutrition, health and well-being for all.

Boomer Esiason's Heroes Foundation: The Foundation is a partnership of leaders in the medical and business communities joining with a committed core of volunteers to provide financial support to research aimed at finding a cure for cystic fibrosis. The Foundation works to heighten awareness of cystic fibrosis and to provide a better quality of life for those affected by cystic fibrosis.

CF Care: Sponsored by Ortho-McNeil Pharmaceutical, this site provides a resource for knowledge and hope for the CF community.

If you would like to see other information on this page:

Many thanks to Celine Dion for her committment to Cystic Fibrosis

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