Cystic fibrosis (CF) is a disease that causes the body to make thick, sticky mucus. The thick mucus blocks airways, damages the lungs, and makes it hard to breathe. It can also lead to lung and sinus infections.
The thick mucus can also block the tube that connects the pancreas to the intestines. The pancreas makes digestive juices that help digest food. When this tube is blocked, it’s harder for you to digest food.
CF can affect all races and ethnic groups, but it is seen mostly in white people with northern European ancestors.
There is no cure for CF. It is a life-long disease that gets worse over time. Many people with CF live into their mid 30s. Children born after 2000 may live longer because of better ways to manage CF.
CF is inherited, which means that it is passed from parents to children through their genes. Genes are inside each cell of your body. They contain the information that tells your body how to develop and work. When you have CF, the genes you inherited cause the body to make thick mucus.
To have CF, a child must inherit 1 CF gene from each parent. If a child gets a CF gene from just one parent, he or she is a carrier but does not have CF. If both parents have the CF gene, each child has a 25% chance of having CF.
CF affects people in different ways. Often children start having symptoms soon after birth. Other children may have a milder form of the disease that doesn't show up until they are teenagers or young adults.
Your child may have some, but not all of these symptoms:
Most children with CF are diagnosed before they are a year old. Newborn screening blood tests include a test for CF. A positive blood test needs to be confirmed with a sweat test or genetic test.
The goal of treatment is to slow down the progress of the disease and help your child lead as normal a life as possible. Treatment for CF includes:
Diet and Exercise
Your child may need to eat more calories to grow normally, keep a good weight, have energy, and fight infections. This may mean giving a baby high-calorie breast milk or formula. For a toddler or older child it means increasing the amount of fat and protein in the diet. Milk products are an easy way to add calories. For example, you can give your child whole milk, use extra butter on foods, or add extra cheese to pizza or casseroles.
Encourage your child to exercise according to your healthcare provider’s recommendations. Exercise can help loosen mucus and make the heart and lungs stronger.
You and your child will learn ways to clear your child’s airways. You can do some things yourself, and some require special equipment or a trained person to help you. They include:
Follow the full course of treatment prescribed by your child's healthcare provider. In addition:
Make sure you know when your child should come back for a checkup. Keep all appointments for provider visits or tests.