|
What Is Cystic Fibrosis?Cystic Fibrosis (CF) is the most common, fatal hereditary disease in the United States.Cystic Fibrosis (CF) affects 30,000 children and young adults in the United States. CF causes a sticky, thick mucus to line the lungs, small intestines, sweat glands and pancreas. This results in the deterioration of lung tissue making it difficult to breathe. It also prevents necessary nutrient absorption in the small intestine and blocks pancreatic ducts from releasing digestive enzymes. 1 in every 23 Americans are symptomless carriers of the CF gene. Cystic fibrosis is an autosomal recessive genetic disease. This means that to have the disease, a child must inherit two copies of the defective gene, one from each parent. Approximately 1 in 25 Americans carries a single cystic fibrosis gene, and they do not experience any significant health problems. This means that potentially many adults may not know that they carry the gene. CF patients are frequently hospitalized for chronic lung infections and digestive disorders. A typical hospital stay is 10 to 14 days. SymptomsCF 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 · Asthma · Diabetes and/or liver disorders 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 Do You Know If You or Your Child Has CF?If you believe your child may have CF, you should ask your doctor about having a "sweat test". The Sweat Chloride Test is a reliable diagnostic tool. This simple, painless test measures the amount of salt in the sweat. A high level of salt may indicate the presence of CF.What Can You Do If You Have CF?· Work closely with your physician for proper treatment.· Educate yourself about the disease. Utilize the Lungs for Life website as your resource and link to the many CF support groups, conferences and newsletters available. · While there is no cure for CF at present, do not become discouraged! There are many excellent treatment options and millions of dollars are spent each year in the search for a cure. What Does Lungs for Life Foundation Do?·The Lungs for Life Foundation is an independent 501(c)3 volunteer organization dedicated to improving the quality of life for patients and families with cystic fibrosis. LFL was founded in 2000 in order to provide short-term financial assistance to help CF patients and families with emergencies, treatment assistance and special needs assistance. Referral to our programs is through healthcare professionals and/or hospital social worker. The Lungs for Life Foundation does not distribute funds directly to patients.· In addition, the Lungs for Life Foundation produces an e-newsletter, Life & Breath, that provides related information and foundation news for CF patients, families and healthcare workers. Due to the risk of infection, many CF patients cannot attend support groups or get to know other CF patients. To address this issue, the Lungs for Life Foundation provides that support through our newsletter, forums and chats. · The Foundation participates in the National Cystic Fibrosis Awareness Month each May. The goal is to educate the public about cystic fibrosis and to raise funds for programs. How Can You Assist Lungs for Life, Inc.?· Sponsor the Life & Breath E-newsletter and/or make a personal, tax-deductible donation.· 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 Lungs for Life Foundation. · Participate in National Cystic Fibrosis Awareness Month by utilizing the awareness tools LFL provides on this website. Thank you in advance for your support. |
|
||||||||||||||||||||||
|
||||||||||||||||||||||||