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I also am a carrier. I lost my daughter to CF in 1993. My oldest son and youngest daughter do not have CF but my daughter is D508 positive. If you Google CF Carrier and name the symptoms, you will find a ton of info. I had my gall bladder out at age 19 and this past year had bile duct stones and pancreatitis. I also have had MS since age 40 (21 yrs). My daughter who does not have CF had her 1st sinus surgery at age 4. She has PCOS, endometriosis, sinus disease and has gluten intolerance. A lot of the CF symptoms are present in carriers. You will need to find a doctor that believes there are symptoms from being a carrier or you won't get the quality care you need. I have spoken with the CF specialist in this area and he has researched the connection and firmly believes there is a definite connection. Good luck!
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I tried to find your facebook group. My sister found out she is a carrier and I suspect I am as well and we both have symptoms. I am trying to do some research. Would love to share and learn.
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When she coughs, I simply hear myself during a chest infection. I reallly do not understand why the so called "academics" do hardly give any attention to this phenomena of being carrier of "only" one (detectable) CF gen. Although in the Netherlands this is taken more and more serious, there is still much more work to be done. Wishing you ll the best with your search for appropriate help, regards from across the ocean.
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What a welcome website. I am 63 this year, my sister is 20 months younger and was diagnosed with CF when she was a baby. I was tested a few years back, as sister and I have many similar symptoms, but mine are ultimately milder, and was found to be a carrier. I have spoken to my GP about this and his response was - you've either got CF or you haven't, there's no in between. I have gut problems (IBS?), chest problems (bronchiectasis), sweat profusely, salty sweat, no energy, etc. Our mother said of us as children, your sister has CF, you were always ill.
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Following on from my "what a welcome website" above. I forget to mention... one contributor said something like, their mucus was very thick and had form, substance. Mine is too, even when not infected, I can cough up little pieces of clear jelly (jello?) and, when infected, almost scaly like stuff. Ugghhh!!! Sorry to be so gross.
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