Cystic fibrosis is a lifelong illness that causes mucus to become thick and sticky. Mucus is the slippery substance inside the nose, throat, sinuses, and airways. With this condition, the mucus builds up and clogs passages in the body. The mucus can lead to serious breathing problems and lung disease. When it affects the pancreas, it can lead to malnutrition, diabetes, and problems with a child's growth and development. It also can lead to severe constipation and bowel blockage. The illness cannot be cured, but it can be treated.
Finding out that your child has cystic fibrosis is very upsetting. You may be worried about your child's future, because the disease does shorten a person's life. But the life span is increasing for people with this disease. On average, people who have cystic fibrosis live into their mid-to-late 30s, although new treatments are making it possible for some people to live even longer. People who have mild disease may have a normal life span.
You also may be worried about how to care for your child. It is normal to feel overwhelmed by how hard it is to take care of a child with cystic fibrosis. However, you can learn to do all that your child needs. You also need to take care of yourself. Get plenty of rest, eat good food, and exercise.
Follow-up care is a key part of your child’s treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if your child is having problems. It’s also a good idea to know your child’s test results and keep a list of the medicines your child takes.
You and your child will struggle at times with this illness. But having a good attitude and lots of support will help you and your child cope.
Call 911 anytime you think your child may need emergency care. For example, call if:
Call your doctor or nurse call line now or seek immediate medical care if:
Watch closely for changes in your child's health, and be sure to contact your doctor or nurse call line if:
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Current as of: July 26, 2016
Adam Husney, MD - Family Medicine
& Kathleen Romito, MD - Family Medicine & R. Steven Tharratt, MD, MPVM, FACP, FCCP - Pulmonology, Critical Care Medicine, Medical Toxicology
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