- Very Salty Tasting Skin
- Persistant coughing or wheezing
- Recurrent respiratory infections, including pneumonia or bronchitis
- Excessive mucous production
- Poor weight gain despite adequate appetite
- Frequents foul smelling stools and chronic diarrhea
- Enzyme Replacement Therapy. This therapy replaces the digestive enzymes that the pancreas of a person with CF is unable to excrete.
- Airway Clearance Techniques. Commonly used ACTs include chest physiotherapy/postural drainage (using gravity to drain mucous from all parts of the lungs) huffing and coughing, flutter valve, pep valve, and mechanical percussion vest.
What is Cystic Fibrosis?
Cystic Fibrosis (CF) is the most common genetic disease that currently affects approximately 30,000 children and young adults in the United States. The incidence of CF is highest in the Caucasian populations, with a rate of 1 in 2,000 live births, compared to 1 in 17,000 for Afro-Americans and 1 in 90,000 for Asians. According to the Cystic Fibrosis Foundation, as many as 1 in 31 Americans are symptomless carriers of the defective CF gene, and every year about 1,000 new cases of CF are diagnosed. CF is presently incurable. A child inherits CF as a result of two defective CF genes, one from each parent.
CF is a disease that most commonly affects the lungs and digestive system (especially the pancreas). It causes the abnormal production of thick sticky mucous that clogs the airways of the lungs, resulting in pulmonary obstructions and life-threatening bacterial infections. The mucus also prevents the pancreas from releasing sufficient amounts of pancreatic enzymes (which aid in digestion) from reaching the bowel, resulting in undernutrition and poor growth. CF also affects the sweat glands, causing excessive levels of salt in sweat.
What are the symptoms?
CF has a variety of symptoms, the most common being:
Diagnosis
Currently CF is rarely diagnosed at birth, although in Australia CF testing is done routinely in newborns, along with the usual neonatal blood work. CF is typically diagnosed during the early childhood years in young children (eg: before three years of age) who haev had a history of recurrent respiratory infections, steatorrhea (excessive fat in the stools), and/or failure to thrive syndrome. Nearly 8% of people, however, are diagnosed at 18 years or older because they have experienced only mild symptoms of CF. Because one of CF's major symptoms is respiratory infection, a CF diagnosis may be confused with other respiratory infections such as pneumonia, asthma or chronic bronchitis.
The standard diagnostic test for CF is a "sweat test" which measures the amount of salt in a persons sweat. An abnormal sweat test (i.e: high level of salt) is generally what a CF diagnosis is based upon, but the results of a sweat test are not necessarily proof positive of the presence o absence of CF. The presence of chronic obstructive respiratory disease, exocrine pancreatic insufficiency, and /or a positive family history of the disease help confirm the diagnosis.
Current Treatments
Remarkable improvements in the theraputic reatment of CF have evolved in the past decade. For example, pancreatic enzyme replacement therapy is available to facilitate digestion; mucous thinning drugs and aerosol sprays are also available to ease breathing problems; advanced antibiotics are able to treat and prevent respiratory infections; and lung transplants have significantly extended the survival and improved the overall quality of the lives of those who have CF.
The two most common daily CF treatments are:
There is so much information out there, and so many new things are happening daily it seems. The information above was taken from a wonderful diary which I recieved from the great people at http://www.cfcare.org and the great people at Ortho McNeil. Please be sure to visit them for more information.
Below, you will find some great links to many things, such as more information, medical breakthroughs and support groups. I have started an e-mail support group as well.
Please take a moment and subscribe.... the input you can give will be more valuable than you will ever know.
And now for some more links related to CF.
Cystic Fibrosis Foundation A range of information on clinical trials, news, related links, public policy alliance, and other areas.
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Canadian Cystic Fibrosis Foundation Latest news and research regarding cystic fibrosis in Canada, in French and English.
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Cystic Fibrosis Index of On-Line Resources An exhaustive guide to all on-line web pages, news groups, FAQ's, chat rooms, and mailing lists associated with Cystic Fibrosis.
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International Association of Cystic Fibrosis Adults IACFA International association with the purpose of improving the quality of life of all adults with cystic fibrosis, by identifying common problems, enhancing the exchange of information
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Cystic Fibrosis.com Information on coping with the disease, and the CF Roundtable magazine.
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Cystic Fibrosis Research Information on helping the organzation, newsletters, events, vehicle donation, and other areas.
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CF-Web Online archive of CF information.
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Mayo Clinic: Cystic Fibrosis Article on the improvements in the treatment of cystic fibrosis.
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The Cystic Fibrosis Association of Ireland. The Bridge to Life What is Cystic Fibrosis? Cystic Fibrosis is Ireland's most common life-threatening inherited disease.
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Cystic Fibrosis - Doctor's Guide to the Internet The latest medical news and information for patients or friends/parents of patients diagnosed with Cystic Fibrosis and Cystic Fibrosis-related disorders.
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A Family Guide to Cystic Fibrosis Genetic Testing Department of Pediatrics and Human Development Division of Genetics Michigan State University/College of Human Medicine Advances in technology are changing many aspects of our lives.
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Cystic Fibrosis Awareness Page These pages are filled with pictures of people who fight this disease everyday. They represent the fight from every angle..as friends, family, and as those who have the diagnosis of Cystic Fibrosis.
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Cystic Fibrosis 101 This site covers a range of cystic fibrosis issues, and offers 240 links to related sites.
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Support Groups
CF Support groups AOL, ICQ, Mailing Lists and the Florida CF Support group are all listed here.
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Cystic-L - Cystic Fibrosis Info & Support CYSTIC-L is a free email service dedicated to the exchange of information and support specific to cystic fibrosis. Members include people with CF and those who share their lives:
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