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Learn More about Cystic Fibrosis Below

The Chance of Being a CF Carrier Depending on Race/Ethnicity
Ethnicity/Race                       Chance of Being a CF Carrier         Chance Both Partners Are CF Carriers
 
 European Caucasian           1 in 29                                                   1 in 841
 
Ashkenazi Jewish                 1 in 29                                                   1 in 841
 
Hispanic American               1 in 46                                                   1 in 2,116
 
African American                  1 in 65                                                   1 in 4,225
 
Asian American                    1 in 90                                                    1 in 8,100

Can you prevent CF?
Yes you can. There is a simple blood test now available that can identify someone as a carrier.  Read more below

What is the purpose of cystic fibrosis carrier testing?
The purpose of CF carrier testing is to see if a couple is at increased risk for giving birth to a child who will have CF. Cystic fibrosis carrier testing is a laboratory test done on a sample of blood or saliva. If testing shows that a couple is at high risk, additional testing can be done on the developing baby to see whether or not it will have CF. However, most women's test results are normal.
Cystic fibrosis cannot be treated before birth. The purpose of having this information about your developing baby is so you can prepare yourself to care for a child with special health care needs or so you can terminate the pregnancy.
What causes cystic fibrosis?
Cystic fibrosis is a genetic disorder. All genes come in pairs, so everyone has two copies of each gene. One copy comes from your mother and the other from your father. Some genes do not function properly because there is a mistake in them. If a gene has a mistake, it is said to be altered or changed. For some diseases-like CF-both genes of the pair have to be altered for a person to have the disease.
If a person has one changed copy of a CF gene, that person is a carrier for CF. A carrier does not have CF. There are no known health problems associated with being a carrier. If a person has two changed copies of the CF gene, they will develop CF.
When both partners in a couple are carriers, any child they have has a 1-in-4 (25%) chance to inherit a changed copy of the gene from each parent. A child with two changed copies of the CF gene will develop CF.
Could I be a carrier of cystic fibrosis?
Yes. You could be a carrier of CF even if no one in your family has CF and even if you already have children without CF. About one of every 30 white people (about 3 in 100 or about 3%) carries the changed gene. If your family background is not white, your chance of being a carrier is less than 1 in 30. For example, some Asian-American groups have carrier rates of 1 in 90. Check the table below to see your chance of being a carrier according to your ethnic background.
If a relative of yours has CF, or is known to be a carrier of CF, your chance of being a carrier is greater based on your family history than your ethnic background.

NOTE: If your ethnic/racial group is not listed above, please ask your provider for this information. Also, you may want to mention your ethnic/racial group to your provider to learn about prenatal tests for diseases other than CF.
REMEMBER: Both parents must be carriers for the baby to develop CF

If my test result is normal, could I still be a carrier?
Yes. There are some mutations in the CF gene that the current test cannot find. For this reason, you could be told your test result is normal and you could still be a carrier. Like most medical tests, this one has limitations because not all CF mutations are known.
However, these unknown CF mutations are rare. The likelihood that you are a carrier even though you had a normal result is very small.
If the test shows I am a carrier, what should I do?
If the test shows that you are a carrier, the next step is to test the baby's father. Both parents must be carriers for the baby to have CF.
If the father has a normal test result, the chance that your baby will have CF is very, very small. This remaining risk is because the test is not 100% accurate, as mentioned in the previous section.
However, since this is a very rare occurrence, if you are a carrier but the father has a normal result, no further testing would be recommended.
What if both my partner and I are cystic fibrosis carriers?
If two people who are both carriers have a child, that child may have CF. When two carriers have a child together, there is a 1-in-4 (25%) chance with each pregnancy that the child will have CF. This is true even if they already have other children with-or without-CF.
If CF testing shows both parents are carriers, you might then see a provider for genetic counseling. This person could give you more information and help you decide if you want to test the baby for CF. This could be done around the 11th week of pregnancy using CVS (chorionic villus sampling). This involves removing a tiny piece of the placenta. Or it could be done around the 16th week of pregnancy using amniocentesis, a procedure where a needle is used to take fluid from around the baby for testing. If either test shows that the baby will develop CF, you could choose to either terminate or continue the pregnancy.
If I had cystic fibrosis testing, do I need it again?
If the test shows you are a carrier, the result is definite and will not change. However, if you are a carrier and have a new partner for a future pregnancy, testing should be considered for that new partner. If you test negative now and become pregnant in the future, you should discuss CF carrier testing at that time with your provider, as test technology changes.
How do I decide whether or not to have carrier testing?
After learning about CF carrier testing, some people decide to have testing, and others decide against it. The cost of testing is covered by some insurance and not by others. You may want to check with your insurance company before deciding if you want testing.
Listed as follows are some reasons other people have given for having or not having CF testing.
Possible reasons to be tested:

What Is Cystic Fibrosis?

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive systems of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene causes the body to produce unusually thick, sticky mucus that: