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The mission of the Cystic Fibrosis Foundation--a donor-supported, nonprofit organization--is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease.
- Cystic fibrosis (CF) is a life-threatening genetic disease affecting approximately 30,000 people in the United States. For people with the disease, a defective gene causes the body to produce a faulty protein that leads to abnormally thick, sticky mucus that clogs the lungs and can result in fatal lung infections. The mucus also obstructs the pancreas, causing difficulty for a person to absorb nutrients in food and can block the bile duct in the liver, eventually causing permanent damage in approximately six percent of people with CF.
- In addition, more than 10 million Americans are genetic carriers. Carriers each have one copy of the defective CF gene, but do not have the disease and its symptoms. It takes two copies of the gene -- one from each parent -- for a child to be born with cystic fibrosis. Each time two carriers conceive, there is a 25 percent chance that their child will have CF; a 50 percent chance that the child will be a carrier of the CF gene but not have the disease; and a 25 percent chance that the child will not be a carrier and not have the disease.
- CF occurs in approximately one of every 3,200 live Caucasian births (in one of every 3,500 live births of all Americans). About 1,000 new cases of CF are diagnosed each year. More than 80 percent of patients are diagnosed by age three; however, nearly 10 percent of newly diagnosed cases are age 18 or older.
- The symptoms of CF vary from person to person due, in part, to the more than 1,000 mutations of the CF gene. Some of the most common symptoms can include: very salty-tasting skin; persistent coughing; frequent pneumonia, wheezing or shortness of breath; a failure to gain weight at the normal rate, perhaps with excessive appetite; and difficulty in having a bowel movement or frequent, abnormal bowel movements.
- Adults with CF may experience health challenges such as CF-related diabetes and osteoporosis. CF also can cause reproductive problems -- more than 95 percent of men with CF are sterile. But, with new technologies, some are becoming fathers. Although many women with CF are able to conceive, limited lung function and other health factors may make it difficult to carry a child to term.
- Prompt, aggressive treatment of CF symptoms can extend the lives of those with the disease. The sweat test is the standard diagnostic test for CF. The CF Foundation recommends that the sweat test be performed at a CF Foundation-accredited care center, which has strict guidelines to ensure accurate results. This simple and painless procedure measures the amount of salt in the sweat. A high salt level indicates CF.
- The ongoing treatment of CF depends upon the stage of the disease and the organs involved. Clearing mucus from the lungs is an important part of the daily CF treatment regimen. Chest physical therapy is one form of airway clearance, and it requires vigorous percussion (by using cupped hands) on the back and chest to dislodge the thick mucus from the lungs. Other forms of airway clearance can be done with the help of mechanical devices used to stimulate mucus clearance. Other types of treatments include: TOBIÂ (tobramycin solution for inhalation), an aerosolized antibiotic used to treat lung infections; PulmozymeÂ, a mucus-thinning drug shown to reduce the number of lung infections and improve lung function; and azithromycin, an antibiotic proven to be effective in people with CF whose lungs are chronically infected with the common Pseudomonas aeruginosa bacteria.
- When CF affects the pancreas, as it does in the majority of patients, the body does not absorb sufficient nutrients needed to grow and to thrive. Most people with CF eat a high-calorie diet and take replacement vitamins, and approximately 90 percent of people with CF take pancreatic enzyme replacements to help them absorb nutrients in digestion.
- The Cystic Fibrosis Foundation, headquartered in Bethesda, Md., is a donor-supported, nonprofit organization committed to finding therapies and ultimately a cure for cystic fibrosis, and to improving the lives of those with the disease. In 1955, concerned families established the CF Foundation hoping to find a cure for this baffling and mysterious disease. Today, 50 years later, tremendous progress has been made in understanding CF and improving the lives of those with the disease.
- In 1955, children with CF usually did not live long enough to attend elementary school. Today, according to the CF Foundationâ s National Patient Registry, the median age of survival for people with CF is in the late 30s and more than 40 percent of the CF population is age 18 and older. Many people with CF are living into their 30s, 40s, 50s and beyond. In the last four years alone, more than five years have been added to the median survival age of CF patients.
- In 1955, there was no centralized care system for CF patients. Today, the CF Foundation accredits more than 115 care centers at major teaching and community hospitals, offering comprehensive, quality diagnosis and care nationwide -- including 94 programs specifically for adults. Care center staff includes physicians, nurses, nutritionists, respiratory therapists, social workers, genetic counselors and other medical professionals.
- In 1955, very little was understood about this disease. Today, the basic genetic defect that causes CF has been discovered, an arsenal of remedies have been developed to help treat it, and the CF Foundationâ s â pipelineâ is filled with more than 25 promising CF therapy candidates in clinical trials and six others in laboratory development.