Cystic Fibrosis

Important
It is possible that the main title of the report Cystic Fibrosis is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

CF
Fibrocystic Disease of Pancreas
Mucosis
Mucoviscidosis
Pancreatic Fibrosis

Disorder Subdivisions

None

General Discussion

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.

Resources

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Tel: (301)951-4422
Fax: (301)951-6378
Tel: (800)344-4823
Email: info@cff.org
Internet: http://www.cff.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

American Lung Association
61 Broadway, 6th Floor
New York, NY 10006
USA
Tel: (212)315-8700
Fax: (212)315-8870
Tel: (800)586-4872
Internet: http://www.lungusa.org

Canadian Cystic Fibrosis Foundation
2221 Yonge Street
Suite 601
Toronto
Ontario, Intl M1B 4G8
Canada
Tel: (416) 485-9149
Fax: (416) 485-0960
Tel: (800) 378-2233
Email: info@cysticfibrosis.ca
Internet: http://www.cysticfibrosis.ca

Cystic Fibrosis Trust
Alexandria House
11 London Rd
Bromley
Kent, BR11BY
UK
Tel: 020 8646 7
Fax: 020 8313 0462
Email: enquiries@cftrust.org.uk
Internet: http://www.cftrust.org.uk

NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Tel: (301)654-3810
Fax: (301)907-8906
Tel: (800)891-5389
Email: nddic@info.niddk.nih.gov
Internet: http://www.niddk.nih.gov

Cochrane Cystic Fibrosis and Genetic Disorders Review Group
Institute of Child Health
Royal Liverpool Children's NHS Trust
Alder Hey Hospital, Eaton Road
Liverpool, L12 2 AP
United Kingdom
Tel: +44 (0) 1512525696
Fax: +44 (0) 1512525456
Email: cfgd@liv.ac.uk
Internet: http://www.liv.ac.uk/cfgd/

Cystic Fibrosis Worldwide
Beukenlaan 133
5616 VD
Eindhoven, Intl 01749
The Netherlands
Tel: +31 492 2592760
Fax: +31 492 2592701
Email: info@cfww.org, cnoke@cfww.org
Internet: http://www.cfww.org

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K, 1220
Denmark
Tel: 45 33 14 00 10
Fax: 45 33 14 55 09
Email: mail@sjaeldnediagnoser
Internet: http://www.raredisorders.dk

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated: 8/7/2007
Copyright 1984, 1985, 1986, 1987, 1988, 1989, 1990, 1991, 1992, 1994, 1995, 1996. 1997, 1998, 1999, 2000, 2002, 2007 National Organization for Rare Disorders, Inc.

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