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Cystic Fibrosis
Could my child have this disease?
A new test can give you the answer.
Should I have this test?
It's Your Choice
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What is Cystic Fibrosis?
The most common, serious genetic disease in whites. One in 2,500 white babies in the United States is born with this disease. It interferes with the working of the lungs and the digestive system.
Could a Child of Mine Have Cystic Fibrosis?
Yes.
Even if there is no history of the 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.
Could I be a Cystic Fibrosis Carrier?
Yes.
One in 25 whites is a carrier. Being a carrier does not affect one's health.
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Who May Benefit 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.
Why be Tested?
To aid in decisions concerning pregnancy.
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.
Why Not be Tested?
- If you are of African or Asian origin. cystic fibrosis is less common in Africans and Asians and this test cannot detect most carriers of African or Asian origin.
- If you are not planning children in the near future, you may wish to postpone this test.
- If you are not in contact with the father of your unborn child, it may not be possible to determine your child's chance of having cystic fibrosis.
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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 25% chance (1 in 4 chance) with EACH pregnancy that the child will have cystic fibrosis. Therefore a child with cystic fibrosis may not be the first-born.
What are the Symptoms of Cystic Fibrosis?
The first symptoms of cystic fibrosis usually occur in early childhood. They affect the lungs and the 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 fatigue 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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Females with cystic fibrosis may have difficulty having children. Males with cystic fibrosis are usually unable to father children. Cystic fibrosis does not affect intelligence.
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 chest several times a day to loosen these secretions and help them to drain out.
Children with digestive problems due to cystic fibrosis need to take medicine (pancreatic enzymes) before meals to help them digest their food.
How Long do Patients with Cystic Fibrosis Live?
Some patients die early in childhood; others survive to their 40s or 50s. Most patients develop increasing problems as they get older. Patients with cystic fibrosis dying today average 31 years of age, but patients with cystic fibrosis born today can expect to live longer as treatment improves.
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How Can I Find Out if I am 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.
What does the Cystic Fibrosis Carrier Test Cost?
Currently the test costs between $200 and $250.
Must I Have the Test?
No. It's your choice.
If My Test Shows that I am a Cystic Fibrosis Carrier, What Happens Next?
Your physician may refer you to a genetic 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, your being a carrier is not completely ruled out. There is a small chance that you could be a carrier, yet have a negative test.
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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Where Can I Get More Information on Cystic Fibrosis Carrier Testing?
Ask your physician.
Division of Genetics,
University of Rochester Medical Center
Rochester, NY 14642
Visit our website:
www.urmc.rochester.edu/genetics
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