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Posted By : JaSanne - 8/11/2014 2:38 PM
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)


Posted By : jujub - 8/11/2014 2:48 PM
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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Ulcerative colitis since 2001, starting 8th year of remission with Remicade.
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Posted By : Gemsi - 11/30/2014 5:29 AM
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
Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm from the UK so tell me if I say something you don't understand. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy.

Posted By : JaSanne - 11/30/2014 3:46 PM
Thank you so much for your answer! I will relay the information to my daughter.
55 yr. old--CD over 43 yr. Hemi-colectomy '01; spinal cord injury '01; fistulae since '97; enteropathic arthritis, chronic pain, muscle spasms, scoliosis, rotator cuff injuries

Sometimes I have a wicked sense of humor, other times I have no humor at all, but most of the time I just have no sense.

Posted By : wcherri - 11/15/2015 3:38 PM
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.

Posted By : JaSanne - 11/15/2015 4:46 PM
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
56 yr. old--CD over 44 yr. Hemi-colectomy '01; spinal cord injury '01; fistulae since '97; enteropathic arthritis, chronic pain, muscle spasms, scoliosis, rotator cuff injuries

Posted By : Wiley Coyote - 12/9/2015 3:50 PM
for goodness sake! Has she had the genetic testing for CF yet?

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