Years ago, young children with CF misunderstood their parents' pronunciation of Cystic Fibrosis, and called their disease "Sixty Five Roses".
Cystic Fibrosis is a disease of many disquises. The symptoms of CF vary in severity fromperson to person, and are often similar to
symptoms of other childhood disorders. The symptoms are often mistakenly confused with those of celiac disease, or other nutritional
disorders causing poor absorption of food and failure to thrive. As a result, Cystic Fibrosis may sometimes go undiagnosed for a long time.
In general, Cystic Fibrosis is characterized by the following symptoms:
In some people, the lungs are primarily affected; in others, the digestive system may be more affected.
However, signs of problems in either organ system may show up at any time.
If your child has symptoms of Cystic Fibrosis, the doctor will want to perform a sweat test to determine whether there is an abnormal
amount of salt in the sweat; this is a simple, painless, and reliable test for CF. Often, the doctor will want to do a 2nd sweat test to
confirm the diagnosis.
Cystic Fibrosis is a fatal genetic disorder that affects over 30,000 Americans, usually the most vulnerableamong us: our children.
This terrible disease is marked by chronic infections, clogged airways, and digestive and reproductive problems.
In Cystic Fibrosis, problems occur because the mucus in their lungs is very thick and sticky. Instead of serving as a lubricant, it clogs
the respiratory system and allows bacteria to grow within it, impairing the body's natural defenses. The thick mucus also obstructs the
pancreas, preventing enzymes from reaching the intestines to digest food.
Cystic Fibrosis occurs in roughly one of every 3,000 live births. To have the disease, a child must inherit a defective copy of the CF gene
from each parent. One in 20 Americans (more then 12 million) is an unknowing, symptomless carrier of the disease. Each time two CF
gene carriers conceive a child, there is a 25% chance the child will be born with the disease, a 50% chance that the child will be a carrier,
and a 25 % chance that the child will be a non-carrier.
To date, there is no cure for Cystic Fibrosis. Treatment is improving the length and quality of life for people with CF by helping to
control their symptoms. Aerosols are used to ease breathing, and postural drainage or chest physical therapy helps to remove mucus from
the lungs. Hospitalization may be required for a thorough clean out and/or for treatment of lung infections. Pancreatic enzymes are
taken to help food digestion. To maintain weight, frequent and high-calorie meals and snacks are recommended.
Currently, 50% of CF patients are expected to live into their 30's.