FAQ's (Frequently Asked Questions):

What is Cystic Fibrosis?

Cystic fibrosis is an inherited, incurable, fatal disease, present at birth, which is caused by a defective gene. It affects the respiratory system, pancreas, small intestines, sweat glands, and the reproductive system.

What are the symptoms?

Common symptoms, which can vary in degree, are chronic cough, wheezing, nasal polyps, frequent bouts of pneumonia, clay colored, foul smelling stools, fatigue, enlargement of the liver and spleen, failure to grow or gain weight as expected, diabetes development, salty tasting skin and sweat, and clubbing of fingers and toes.

When do symptoms usually develop?

Onset of symptoms can vary. In many instances, diagnosis is made at birth. The intestines become clogged because the first bowel movements after birth, called meconium, are thickened, cannot pass, and cause intestinal blockage. A baby born with the cystic fibrosis will usually develop symptoms during its first year, however, in some cases, signs of the disease may not show up until adolescence.

No one in my family, or my husband's, has cystic fibrosis. Why did our child develop the disease?

Although there is a very remote possibility that a child can develop cystic fibrosis without the parents being carriers, the disease usually develops when both parents are carriers of the defective gene but are unaware because they have no symptoms.

When two people who are both carriers of this gene produce a child, there is a 25 percent chance the child will be born with the disease, a 50 percent change the child will not have the disease, but will be a carrier, and a 25 percent chance that the child will neither have cystic fibrosis, nor be a carrier.

Detection of cystic fibrosis in the fetus through genetic testing is now possible, as well as genetic testing of prospective parents that have a family history of the disease.

Is there a cure for cystic fibrosis?

There is no cure, however, research is ongoing and new treatments are being developed.

Is cystic fibrosis always fatal?

Unfortunately, at the moment, it continues to be a fatal disease, however, great strides have been made in research and treatment. At one time, children affected with this disease were not expected to live much past seven years of age, but today, the average lifespan is 30 years.