Temecula Valley OB/GYN

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Cystic Firbosis Carrier Testing

What is Cystic Pibrosis?

Cystic fibrosis (CF) is an inherited disease that affects more than 25000 American children and young adults. Symptoms of CF vary but include lung congestion, pneumonia, diarrhea and poor growth. Most people with CF have severe medical problems and some die at a young age. Others have so few symptoms they are unaware they have CF. CF does not affect intelligence.

Although there is no cure for CF at this time, scientists are making progress in improving treatment and in searching for a cure. In the past, many people with CF died at a very young age. Today, many are living into their 20's and 30's.

Is there a chance my baby could have cystic fibrosis?

You can have a child with CF even if there is no history in your family (see chart below) Approximate risk that a couple with no family history of CF will have a child with CF

Ethnic Background Risk

  • Caucasian Couple: 1 in 3,000
  • Hispanic Couple: 1 in 8,000
  • African American Couple: 1 in 15,000
  • Asian American Couple: 1 in 32,000

CF testing can help determine if you are a carrier and at risk to have a child with CF.

  • If both parents are carriers, there is a 1 in 4 (25%) chance, with each pregnancy, that they will have a child with CF.
  • Carriers have one normal CF gene and one altered CF gen.e
  • People with CF have two altered CF genes.
  • Most people have two normal copies of the CF gene.

What CF testing is available?

Pregnant women need plenty of fluids including ten glasses of water daily to help hydration and prevent urinary problems.

Medications

There is a blood test that can be done to find out if you or your partner is a carrier. A National Institutes of Health (NIH) consensus statement developed by a panel of experts representing medical, legal, ethical and public perspectives recommends that CF carrier testing be offered to any couple planning a pregnancy and to any individual with a family history of CF. It is important to understand that CF carrier testing does not detect all CF carriers. If the test shows that you are both CF carriers, your unborn baby can be tested to find out if the baby has CF.

HOW MUCH DOES IT COST TO HAVE CYSTIC FIBROSIS CARRIER TESTING?

Cost and insurance coverage for CF carrier testing vary depending upon the laboratory used and your insurance policy. IT IS THE PATIENT'S RESPONSIBILITY TO VERIFY INSURANCE COVERAGE, IF ANY, FOR CYSTIC FIBROSIS (CF) CARRIER TESTING. I AM ALSO AWARE THAT I AM RESPONSIBLE FOR ALL COSTS ASSOCIATED WITH THIS TEST.

A genetic counselor can provide you with more information about this testing and answer any of your questions. The counselor can also provide you with a detailed brochure about CF and your testing options.

_______ NO. I am not interested in CF carrier testing or in receiving more information about CF testing.

_______ YES. I would like to have more information about CF carrier testing.

Patient Signature: ____________________________ Date: _________________

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