Cystic Fibrosis Forum (EXP)

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  1. L

    Disability threatened

    a friend of mine shared an article with me about a girl who lost her disability https://www.cbsnews.com/news/what-happens-when-someone-loses-disability-insurance/?ftag=CNM-00-10aab6a&linkId=61986426 are any of you having an issue with SSA trying to take your benefits too? Ive looked up the...
  2. L

    unknown genotype

    I have been sorting through the records I have from clinic and hospitalizations and found a document that lists my genotype 2789+5g->a / unknown from what I recall my doctor told me that my mutation was from (discovered?) eastern NC which is interesting since I live in NC, but my inquiry is...
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    taking Ivacaftor?

    I just saw my healthcare team and was told that I qualify for an experimental treatment protocol, apparently Ivacaftor now covers 23 mutations and I have one of those mutations. I am still waiting to see if I get accepted into the study, but I was wondering if anyone is/has taken Ivacaftor and...
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