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Genetic Testing for CF

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Cystic Fibrosis
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JaSanne
Veteran Member
Joined : Oct 2006
Posts : 2086
Posted 8/11/2014 2:38 PM (GMT -6)
Thank you to those who've answered my original post. For several reasons, I have (I hope it will allow me to do that) deleted the body of it. I wish you all well. -Joy

Post Edited (JaSanne) : 12/11/2015 8:10:14 AM (GMT-7)

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jujub
Elite Member
Joined : Mar 2003
Posts : 10422
Posted 8/11/2014 2:48 PM (GMT -6)
This site has information for you; also, the CF foundation could have resources to help.

www.cff.org/aboutCF/Testing/?gclid=CLKp_qCLjMACFSbl7Aod53wA8w
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Gemsi
Veteran Member
Joined : Feb 2007
Posts : 1050
Posted 11/30/2014 5:29 AM (GMT -6)
Hi there,

I know I'm a few months late on this and apologies for that.

The sweat test isn't totally accurate but gives some indication of whether cf might be present. People with cf sweat out 100% more salt than "normal" people so this test measures the amount of salt in the sweat. False negatives can occur if the test hasn't been carried out properly or the patient hasn't produced enough sweat to get an accurate reading. A genetic test would still need to be done after this to determine which genetic mutations of cf your daughter has. A lot of new medication coming out is targeted as specific CF mutations.

There is a genetic test available, two infact. The first one checks the genes for the most common CF gene mutations. It only tests for about 20 different mutations. The second test is more expensive but does a full genetic sweep and can check for a lot more mutations.

It sounds like your daughter has been struggling lots and could really do with some form of diagnosis even if it isn't CF so they know what they're treating.

I hope they find something that helps

All the best

Gem
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JaSanne
Veteran Member
Joined : Oct 2006
Posts : 2086
Posted 11/30/2014 3:46 PM (GMT -6)
Thank you so much for your answer! I will relay the information to my daughter.
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wcherri
New Member
Joined : Nov 2015
Posts : 1
Posted 11/15/2015 3:38 PM (GMT -6)
In the U.S., there is a free program for genetic testing (if you qualify).

Here is the link for MAP:

https://www.cff.org/For-Caregivers/For-Clinicians/Mutation-Analysis-Program/

The Mutation Analysis Program provides free genetic testing to people with CF to help identify their CF gene mutations.
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JaSanne
Veteran Member
Joined : Oct 2006
Posts : 2086
Posted 11/15/2015 4:46 PM (GMT -6)
wcherri,

Thank you so very much for the information! Since I first posted this, my daughter's illness has sapped her even more so. She has not stepped out of our house in about 1.5 years. Again, thank you - Joy
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Wiley Coyote
Regular Member
Joined : Jan 2015
Posts : 37
Posted 12/9/2015 3:50 PM (GMT -6)
for goodness sake! Has she had the genetic testing for CF yet?
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