Specialized Centers
Cystic Fibrosis Center
Frequently Asked Questions
What is cystic fibrosis?
Cystic fibrosis is the most common and most serious genetic disease
in Caucasians. One in 2,500 white babies in the United States is
born with this disease. This disease interferes with the working
of the lungs and the digestive system.
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Could my child have cystic fibrosis?
Even if there is no history of disease in your family, if you
and your partner are both carriers, there is a 1 in 4 chance with
each pregnancy that your child will have cystic fibrosis.
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Could I be a cystic fibrosis carrier?
One in 25 whites is a carrier. Being a carrier does not affect
one's health.
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Could I have a child with cystic fibrosis even though
I have other children who are healthy?
Yes. For parents who are both carriers, there is a 1 in 4 chance
with each pregnancy that the child will have cystic fibrosis. Therefore,
a child with cystic fibrosis may not be the firstborn.
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Who benefits from a carrier test?
Anyone who is white and now pregnant, or planning children in
the near future, and who probably would want her unborn child tested
for cystic fibrosis, if at risk, may benefit.
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Why should I be tested?
To aid in decisions concerning pregnancy.
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Who may not benefit from this carrier test?
- Anyone who is of African or Asian origin
- Anyone who does not want children, is unable to have children,
or is not planning children in the near future
- Anyone who is pregnant but not in contact with the father of
her unborn child
- Anyone who would not want her unborn child tested
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What are the symptoms of cystic fibrosis?
The first symptoms of cystic fibrosis usually occur in early childhood.
They affect the lungs and digestion. In cystic fibrosis, abnormally
thick mucus collects in the lungs. This mucus causes repeated coughing,
wheezing, and attacks of bronchitis and pneumonia. In later years,
patients commonly tire easily and have shortness of breath on effort.
About 85% of children with cystic fibrosis have difficulty digesting
their food. They have frequent, large greasy, foul-smelling stools.
They often gain weight slowly and are small for their age.
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How can I find out if I'm a carrier for cystic fibrosis?
Ask your doctor to perform the cystic fibrosis carrier test on
your blood . If you are having other blood tests, the blood for
cystic fibrosis carrier testing can be drawn at the same time.
If not, blood can be drawn especially for the cystic fibrosis carrier
test.
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Must I have the test?
No - it is your choice.
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If my test shows that I am a cystic fibrosis carrier,
what happens next?
Your physician may refer you to a genetics counselor for an explanation
of exactly what it means for you and what choices you have. If
you have a partner, you may wish to ask your partner to be tested.
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Is the cystic fibrosis carrier test perfect?
No. If your test result is abnormal, you are definitely a carrier.
However, if the test is negative, the possibility of you being
a carrier is not completely ruled out. There is a small chance
that you could be a carrier even with a negative test.
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What happens if my partner and I are both cystic fibrosis
carriers?
If you are pregnant, you can request that your unborn child be
tested. If you are not pregnant now, you can consider having an
unborn child tested in the future. Thus, having a cystic fibrosis
carrier test may be useful to you in family planning.
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How is cystic fibrosis treated?
Children with cystic fibrosis take medicines to loosen the thick
secretions in their lungs. They often take antibiotics. Parents
clap their child's chest several times a day to loosen secretions
and help them drain.
Children with digestive problems due to cystic fibrosis need to
take medicine (pancreatic enzymes) before meals to help them digest
their food.
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How long do patients with cystic fibrosis live?
Babies born today can expect to live longer because treatment
is improving. Adult patients living with cystic fibrosis can average
31 years of life. Most patients develop problems as they get older.
Some patients survive to their 40s or 50s; others die early in
childhood.
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