Thursday, May 9, 2013

May is Cystic Fibrosis Awareness Month!

Happy spring everyone!  I don't know about you but I'm ready for it!

As you may have gathered from the title of this post, May is CF Awareness Month!  I thought I'd do a few posts about CF in general, how it effects me, and what I think of it all.  First, some facts about CF.

  • Its the most common inherited disease, yet there are only about 60,000 people with it world wide.  Roughly 30,000 of those live in the United States.
  • About 90% of people who are carriers for the gene have no known family history of CF.
  • There are about 1800 genetic mutations known to cause CF and more are being found all the time.
  • The CF gene was identified in 1989.
  • When the Cystic Fibrosis Foundation (CFF was founded most children with CF did not love long enough to start school.  
  • The current life expectancy for CF patients in the United States is in the late 30s but there are many who are living well beyond that.
  • In my lifetime the average age of CF patients has doubled.
  • About 45% of CF patients in the US are over 18.
  • More than 70% of patients are diagnosed by age 2 thanks in large part to newborn screening which is mandatory in all 50 states.

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