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Cystic Fibrosis FAQs

Q. What is cystic fibrosis?
A.  Cystic fibrosis is a lifelong disease. The disease causes a thick dry mucus to line surfaces of internal organs. This affects the function of the lungs, pancreas and reproductive system. The average lifespan of an individual with cystic fibrosis is around 30 years. There is not a cure for cystic fibrosis however over the years there have been improvements made to the treatment methods.

Q. What are the symptoms of cystic fibrosis?
A.  The physical effects of cystic fibrosis are not always present at birth. They may develop later in childhood or in early adulthood. The symptoms can vary from person to person. Some of the most common effects are as follows:

  • blockage of the small intestine (in newborns)
  • salty sweat or skin
  • persistent fatty stool or diarrhea
  • lack of energy, poor appetite, and weight loss
  • difficulty breathing and persistent cough

Q. What is the cause of cystic fibrosis?
A.  Cystic fibrosis is a disease which is inherited from the parents. The CF gene is on the 7th chromosome. In order for a person to get Cystic Fibrosis, a person must have two CF genes present. If they have one CF gene and one normal gene then they are considered a carrier of CF. There are over 1,200 variations of the CF gene which can cause a wide variety of variations in symptoms. These genes can be identified through genetic testing.

Q. Who is affected by cystic fibrosis?
A.  Cystic fibrosis is currently affecting 30,000 children and young adults in the US.There is a difference in the number of people affected in different ethnic backgrounds. The rates of CF instances per ethnic groups are as follows:

  • one in 3,600 Caucasians
  • one in 9,500 Hispanics
  • one in 17,000 African Americans
  • one in 32,000 Asian
  • one in 4,000 Native American Indians

Q. Who should be screened for being a CF carrier?
A.  The decision to be tested for the carrier gene or not to be tested for the gene is really dependent on several factors such as:

  • Individuals that have CF
  • Individuals that have CF running in their families
  • Individuals that already have a child with CF

Prenatal screening is the most accurate when both parents are tested.

Q. Can I be a carrier and not have CF?
A.  Yes, it is possible for you to be a carrier of CF and not actually have CF. This is true when you have inherited one normal gene and one affected gene. In order for you child to have CF your child would have had to inherit one affected gene from each parent. A child cannot get CF if only one of the parents is a carrier.

Q. Will CF testing be covered by my insurance?
A.  While it is very common that CF testing is covered by insurance, it is true that every plan may vary. It is important to contact your insurance provider and verify the services that they will cover before requesting the CF test from your doctor.

Q. If I have already been tested for cystic fibrosis, do I need to be retested?
A.  If you have received your test results and you are a carrier of CF, the results are final and will not change. However, if you are changing partners and you are planning a pregnancy then it would be important for your partner to be tested. As a part of your routine prenatal checkup it is important to discuss CF screening.

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