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Why be aware of cystic fibrosis?...

Posted Sep 13 2008 3:59pm

Why be aware of cystic fibrosis? As many as 1 in 25 people in the US is a CF carrier. And that’s a pretty high carrier rate for a condition that most people don’t know about.

Cystic fibrosis, or CF, is an inherited disease that affects the lungs, digestive system, sweat glands, and male fertility. If you are pregnant - or thinging about getting pregnant - you should know about CF.

You might be suprised to know:

  • A simple genetic test can help you find out if you are a carrier. If you are, you can figure out your chances of passing on that CF mutation to a child. If your partner is also a carrier, you have a 1 in 4 chance of having a child with CF.
  • CF occurs in all ethnic groups, but people with European or Ashkenazi Jewish ancestry are more likely to be carriers than others.
  • CF mutations can be passed down “silently” for many generations, without anyone in the family ever having CF.
  • This is why medical guidelines say that everyone who is pregnant or planning a pregnancy — and everyone with Caucasian ancestry — should be offered CF carrier screening.
  • In rare instances, people with frequent lung infections or chronic sinusitis are diagnosed late in adulthood as having CF. (Most people don’t hear about “mild” CF.)
  • There are over a 1000 known CF mutations, and scientists are learning more about what they mean every day. Treatments are continually in development, and people with CF are living longer and healthier lives than before.

Want to learn more or spread the word about CF? The Cystic Fibrosis Foundation is a great resource that has been providing information, support and advocacy for 51 years. (Here are more resources.) Looking for support? The Lawrences are a family blogging about their experiences of raising their children, including a daughter with CF.

Technorati Tags: cystic fibrosis, CF, carrier screening, genetic testing, pregnancy, disease

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