What Is Cystic Fibrosis?
Cystic Fibrosis (CF) is the most common, fatal hereditary disease in the U.S. (Source:
CF is a cell disorder that creates mucus that lines the lungs, small intestines, sweat glands and pancreas. This thick, sticky mucus contributes to the destruction of lung tissue and impedes necessary gas exchange in the lungs. It also prevents nutrient absorption in the small intestines, and blocks pancreatic ducts from releasing digestive enzymes. Approximately 85% of all people with CF cannot properly digest their food without supplemental enzymes.
CF patients exhibit some or all of these symptoms to varying degrees:
· Salty-tasting skin
· Excessive appetite along with poor weight gain
· Persistent cough, wheezing or pneumonia
· Loose, foul smelling stools
· Clubbed fingers
· Digestive disorders
· Smaller than average height and weight
· Susceptibility to heat prostration and dehydration
· Male sterility
· Diabetes and/or liver disorders
CF patients are frequently hospitalized for chronic lung infections and digestive disorders. A typical hospital stay is 10 to 14 days.
How Is Cystic Fibrosis Treated?
CF patients follow a strict regimen to treat the disease as well as to reduce the risk of contracting outside infections. For example, patients must avoid others with colds or other respiratory infections. The treatment regimen can include:
· Oral and/or IV Antibiotics to fight respiratory infections.
· Vitamins such as Vitamin E, C, Zinc, Calcium, and a Multi-Vitamin to improve general health.
· Chest physical therapy, bronchodilators, and other treatments that clear airways and dislodge mucus from the lungs (may be required as many as four times a day).
Bronchodilators are generally given in the form of aerosol treatments, but the same medication can also be administered by mouth.
· Steroids, such as prednisone, to reduce inflammation in the lungs.
· Supplemental oxygen therapy to relieve the lungs and the body's struggle to oxygenate the blood.
· Enzymes to aid in digestion.
· Feeding tubes administered during the night with calorically dense liquid nutrition, for weight gain.
Many CF patients in the most critical stage of the disease are on waiting lists for lung transplants. The wait can be up to 2 years at some transplant centers.
How Common Is CF?
· 30,000 American Children and Adults have CF. (This may seem like a small number but only half of those with CF survive to age 31.)
· One in 2,500 American children are born with CF.
· Approximately 1,300 new cases are diagnosed each year. Improved diagnostic techniques have resulted in newly identified cases in people of all ages.
· Twelve million (12,000,000) Americans or 1 in 23 carry the CF gene but have no symptoms. This is a critical factor in any hereditary disease.
How Do You Know If You or Your Child Has CF?
Review the list of symptoms as described in this fact sheet.
If you or your child has most of the symptoms indicated, you should ask your doctor about having a "sweat test". The Sweat Chloride Test is a reliable tool for diagnosing Cystic Fibrosis. This simple, painless test measures the amount of salt in the sweat. A high level of salt may indicate the presence of CF. Recently developed genetic techniques using DNA analysis can be definitive when positive, but because hundreds of alleles (or groups of genes) can cause CF, no single genetic test works in all cases.
What Can You Do If You Have CF?
· Contact your physician immediately.
· Educate yourself about the disease. There are many CF support groups, conferences, educational meetings and newsletters with information. There is also a great deal of information on the internet. For information about CF related resources contact the Cystic Fibrosis-Reaching Out Foundation.
· Don't become discouraged. Many new advances in research provide hope for all who have this disease. Scientists have discovered the gene that causes CF and gene therapy research is moving forward. While there is no cure for CF at present, many recent developments in medicine-such as a new drug that reduces infections by breaking up thick mucus accumulations-make it easier to manage the disease.
What Does Cystic Fibrosis-Reaching Out Foundation, Inc. Do?
·The Cystic Fibrosis-Reaching Out Foundation, Inc. is an independent 501(c)3 volunteer organization dedicated to enhancing the quality of life for patients and families with Cystic Fibrosis. ROF was founded in 1998 in order to provide short-term financial assistance to help CF patients and families with medical emergencies, nutritional assistance and insurance assistance. Healthcare professionals and hospital social workers identify recipients of this assistance. The Cystic Fibrosis-Reaching Out Foundation does not distribute funds directly to patients.
· In addition, The Cystic Fibrosis-Reaching Out Foundation, Inc. produces a newsletter that provides information and educates CF patients, families and healthcare workers about the disease, treatments and research. Due to the risk of infection, many CF patients cannot attend support groups or get to know other CF patients. With that in mind, the Cystic Fibrosis-Reaching Out Foundation works to provide support through the newsletter and a pen pal program.
· The Foundation participates in CF Awareness Week every October. The goal is to educate the public about Cystic Fibrosis and raise funds for research.
How Can You Assist Cystic Fibrosis-Reaching Out Foundation, Inc.?
· Sponsor The Foundation's newsletter and/or make a personal, tax-deductible donation. Personal checks can be made out to Cystic Fibrosis-Reaching Out Foundation, Inc., and mailed to the address below. We can accept contributions by your credit card on this website.
· Many companies have grant programs that donate funds to qualified agencies and foundations. Forward information about your company's grant programs or contact person to the address or fax number below. This information is greatly appreciated.
· Distribute or post Cystic Fibrosis information to your co-workers, church, clubs etc. The Foundation will provide the information to you for distribution.
Thank you for your support.
Cystic Fibrosis-Reaching Out Foundation, Inc.
PO Box 870747
Stone Mountain, GA 30087
The Cystic Fibrosis-Reaching Out Foundation is a non-profit Foundation under Section 501 (c) 3 of the Internal Revenue Code. Accordingly, the Foundation is not required to pay income taxes. Donors may deduct contributions to the Cystic Fibrosis-Reaching Out Foundation Inc, only to the extent that their contributions are gifts, with no consideration given.