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A closer look at Cystic Fibrosis

More... Cystic Fibrosis Foundation

Cystic fibrosis is an inherited condition that affects breathing and digestion.

Cystic fibrosis, known as CF, is not contagious. It is passed along to children by their parents. CF affects the glands, causing them to generate thick and sticky mucus rather than thin, watery fluid. As a result, dust and germs accumulate in the lungs and cause respiratory problems, infections, and lung damage.

The thick secretions also block the transfer of enzymes needed for digestion of food in the intestine. Without proper digestion, children with CF have a difficult time gaining weight and growing like they should.

Depending on how severe the condition is, some children with cystic fibrosis can look forward to growing up and living satisfying adult lives, although their life expectancy is shorter than average. Not too many years ago, CF was known as a children’s disease because few lived beyond childhood. Medical advances, however, have prolonged life expectancy to 30 years or more for some who have the condition.

As many as 40,000 Americans have cystic fibrosis, and it continues to occur in about one in every 2,500 newborn babies. The likelihood of a children being born with the condition depends on the genes they inherit from their parents. Some ethnic groups are more prone to carry the defective gene that causes CF. Caucasians have a one in 25 chance of carrying the gene. In descending order, the gene is also in the heritage of Ashkenazi Jews, Hispanics, African-Americans, and Asians.

Genetic testing is the most direct method of detecting the mutant gene that causes cystic fibrosis, and some states require testing of all newborns.

The symptoms and severity of cystic fibrosis vary from one child to another, and this determines the medical care to be rendered under a physician’s guidance. Typical symptoms include breathing problems such as clogged airways in the lungs, sinus infections, coughing, wheezing, respiratory infections, pneumonia, polyps in the nose, as well digestive problems that result in poor weight gain and loose, fatty stools.

Though there is no cure, children with cystic fibrosis obtain relief by controlling the symptoms. Breathing medicated mists and using various techniques for breaking up the thick mucus in the lungs is one approach. Taking enzymes to help digest food is another. Eating high calorie meals and snacks help with weight gain and physical development.

Parents of a child with cystic fibrosis should ensure regular care and checkups by a physician and a strict routine of following the doctor’s directions for treating the symptoms. Children should not be over protected because of their condition, however, and to the extent possible, they should engage in regular exercise and physical activity.

CF has no effect on intellect or mental ability, so parents should support their child in achieving an education. For some children, illnesses that cause absence from school may make it difficult to maintain regular class attendance. Teachers should know that a child has CF, and arrangements may need to be made for make-up classes and exams. A child’s friends at school also should learn about CF so they are not as likely to ask awkward questions.

Children with CF can go on field trips and stay overnight with playmates so long as provision is made for taking their medications, getting their breathing treatments, and eating high energy foods. A child with cystic fibrosis should carry identification and medical information and contacts while away from home. A medical alert bracelet is handy.

Because of increased longevity, some youth with cystic fibrosis face the same concerns as others regarding going to college, getting a loan, buying a car, and living independently.

If you are a Texas resident and are not approved as a foster or adoptive family, please fill out our Adoption and Foster Care Interest form in the Get Started section.

If you have questions or want to inquire about a specific child or sibling group, contact the Texas Adoption Resource Exchange (TARE) or call 1-800-233-3405.

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