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About Cystic Fibrosis
Cystic Fibrosis, commonly known as CF, is a genetic disease affecting approximately 30,000 children and adults in the United States alone. A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to break down and absorb food. People with CF have a variety of symptoms including, but not limited to: very salty-tasting skin; persistent coughing, at times with phlegm; wheezing or shortness of breath; and an excessive appetite but poor weight gain. Symptoms vary from persons to person due in part to the more than 1,500 mutations of the CF gene.
There are more than 10 million people in the US who are unknowing carriers of the CF gene. In order for a child to have CF, he or she must inherit one defective gene from each parent. Each time two CF carriers have a child, there is a 25% chance that the child will have CF, a 25% chance he or she will be a symptomless carrier, and a 50% chance that the child will be a non-carrier. Approximately one in every 3500 babies born will have Cystic Fibrosis.
The 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 a form of airway clearance done by vigorous clapping on the back and chest to dislodge the thick mucus from the lungs. This must be done every day to keep the lungs and airways clear. CF also affects the pancreas in the majority of patients, keeping the body from absorbing sufficient nutrients needed to grow and to thrive. Most people with CF take daily vitamin supplements, eat a high-calorie diet, and take pancreatic enzyme replacements with every meal to help them digest their food. Often children and young adults with CF will take up to 50 or more pills a day to control the disease.
Years ago, children with CF were only living into their teen years. Thankfully, today many children are seeing adulthood, living into their 30’s and 40’s in some cases. According to the CF Foundation, the median age of survival for persons with CF is about 37 years, however, we continue to lose precious lives to CF every day. Many, like Cody, at a much younger age. Persons with CF typically require several hospital stays every year. These hospital stays last from 10-21 days, during which high doses of antibiotics are given, increased intense chest PT and aerosols are administered, and physical therapy is received to "tune-up" the level of health for the patient. Hospital stays are often as frequent as every 3-6 weeks for some CF patients. A lung transplant can extend the life a child or young adult with CF and research is consistently conducted to find a cure for this genetic disease.
While currently there is no cure for Cystic Fibrosis, scientists are searching for a cure. The gene that causes CF was discovered in 1989. Since that time, great advances have been made. Research and testing have contributed to prolonged life expectancy and an increase in the quality of life for the children and young adults who have this disease. With your help, one day soon we will find a cure.