Many cystic fibrosis patients receive care from the same team of doctors from birth through their teenage years, Champion said. Patients become attached to their doctors, and vice versa. Meanwhile, patients are dealing with the challenges that every teenager must confront: relationships, education, leaving home and choosing a career, said Elisabeth Dellon, MD, MPH, assistant professor of pediatrics in the division of pulmonology.
At UNC, doctors begin discussing transition with patients in early adolescence. Doing so can help patients understand that graduating to adult care is a normal part of growing up, Champion said. Doctors are also working to improve communication between pediatric and adult specialty teams and developing a program to orient teens to adult care.
Pediatricians are also learning to help their young patients transition to adult medicine. First, know your disease, Johnson said.
They can teach a kid with CF to do special breathing exercises that help get rid of extra mucus. Breathing treatments also help by adding moisture and delivering medicine into the lungs. To help prevent or fight lung infections, wash your hands well and often and try to avoid people who are sick. Taking preventive antibiotics, which kill bacteria, also can help. Sometimes, kids with CF can get respiratory infections and may need to stay at the hospital for a while.
The good news is that newer medicines are more effective and help kids with CF recover faster. Kids with cystic fibrosis have to work a little harder to breathe, and this burns more calories.
So it's important that they get enough to eat. Even a kid with CF who eats healthy foods and gets plenty of calories may still have trouble growing and gaining weight. The problem is that the pancreas can't deliver the enzymes needed to break down protein and fat in food.
Kids with CF may have more frequent bowel movements poop because they're not absorbing the protein and fat they eat. Most kids with CF take medicine that helps digest food but may also need to take a vitamin and mineral supplement.
The body produces thick and sticky mucus that can clog the lungs and obstruct the pancreas. Cystic fibrosis CF can be life-threatening, and people with the condition tend to have a shorter-than-normal life span. Sixty years ago , many children with CF died before reaching elementary school age. However, advances in treatment mean that people with CF often live into their 30s, 40s, and beyond. There is currently no cure for CF. It affects some 30, people in the United States with around 1, new cases diagnosed each year.
Of these new diagnoses, 75 percent are made in children under the age of 2 years. CF is a genetic disease that mainly affects the lungs and digestive system, but it can result in fatal complications such as liver disease and diabetes.
The defective gene responsible for CF leads to the creation of thicker, stickier mucus than is usual. This mucus is difficult to cough out of the lungs. This can make breathing difficult and lead to severe lung infections. The mucus also interferes with pancreatic function by preventing enzymes from properly breaking down food. Digestive problems result, potentially leading to malnutrition. This thickening of mucus can also cause male infertility by blocking the vas deferens, or the tube that carries the sperm from the testes to the urethra.
CF is serious, with potentially life-threatening consequences. The most common cause of death in people with CF is respiratory failure. Obstruction in the pancreas can lead to malnutrition and poor growth. It has also been associated with an increased risk of diabetes and osteoporosis. Treatment can manage the symptoms of the disease, however, and improve quality of life.
Symptoms can vary and treatment plans will be individualized. It is crucial for people with CF to get rid of mucus from their lungs to allow clear breathing and minimize lung infections. Airway clearance techniques ACT can help people with CF to loosen and get rid of mucus from their lungs. We have to develop a viable way to treat and reverse the effects of the illness in the final stages of the disease.
Solving this problem is how we honor the people like Storm, Claire and the tens of thousands of others whom cystic fibrosis has taken from us. Please join me in celebrating and honoring all of those people who have been taken from us too early. A post shared by Claire Wineland claire. Simply put, half of the people cystic fibrosis kills are younger than 30 years old.
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