Cystic Fibrosis Forum (EXP)

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  1. M

    Munchausen by Internet - a phycological disorder

    Thats messed up. I cant believe anyone would do this.
  2. M

    Only one in family with CF

    I have the same story. I have 6 brothers and sisters, and over 30 cousins and Im the only one with CF. There was a cousin about 30 years ago that died very young from what they thought was pneumonia, but i guess we'll never really know.
  3. M

    Only one in family with CF

    I have the same story. I have 6 brothers and sisters, and over 30 cousins and Im the only one with CF. There was a cousin about 30 years ago that died very young from what they thought was pneumonia, but i guess we'll never really know.
  4. M

    Only one in family with CF

    I have the same story. I have 6 brothers and sisters, and over 30 cousins and Im the only one with CF. There was a cousin about 30 years ago that died very young from what they thought was pneumonia, but i guess we'll never really know.
  5. M

    Creon enzyme problems

    I hated taking pills when I was a kid, so my mom tried to make it into a game for me. She used to empty some capsules for her to take and say "if you finish yours before I finish mine you get to ...(insert some type of treat here)..." I dont remember it, but I guess it worked really well...
  6. M

    Creon enzyme problems

    I hated taking pills when I was a kid, so my mom tried to make it into a game for me. She used to empty some capsules for her to take and say "if you finish yours before I finish mine you get to ...(insert some type of treat here)..." I dont remember it, but I guess it worked really well...
  7. M

    Creon enzyme problems

    I hated taking pills when I was a kid, so my mom tried to make it into a game for me. She used to empty some capsules for her to take and say "if you finish yours before I finish mine you get to ...(insert some type of treat here)..." I dont remember it, but I guess it worked really well...
  8. M

    FDA Approval of Enzymes??

    I got a letter from my doc the other day saying that the FDA has asked all enzyme to re-apply for approval and the deadline is at the end of this month. So far, only two have gotten a re-approval, which doesn't include mine (Pancrecarb), this is the only enzyme that Ive been on that actually...
  9. M

    FDA Approval of Enzymes??

    I got a letter from my doc the other day saying that the FDA has asked all enzyme to re-apply for approval and the deadline is at the end of this month. So far, only two have gotten a re-approval, which doesn't include mine (Pancrecarb), this is the only enzyme that Ive been on that actually...
  10. M

    FDA Approval of Enzymes??

    I got a letter from my doc the other day saying that the FDA has asked all enzyme to re-apply for approval and the deadline is at the end of this month. So far, only two have gotten a re-approval, which doesn't include mine (Pancrecarb), this is the only enzyme that Ive been on that actually...
  11. M

    FDA Approval of Enzymes??

    I got a letter from my doc the other day saying that the FDA has asked all enzyme to re-apply for approval and the deadline is at the end of this month. So far, only two have gotten a re-approval, which doesn't include mine (Pancrecarb), this is the only enzyme that Ive been on that actually...
  12. M

    FDA Approval of Enzymes??

    I got a letter from my doc the other day saying that the FDA has asked all enzyme to re-apply for approval and the deadline is at the end of this month. So far, only two have gotten a re-approval, which doesn't include mine (Pancrecarb), this is the only enzyme that Ive been on that actually...
  13. M

    Mildly awkward question

    This is kind of embarrassing, but I had a question about breast development... lately my boobs have been super tender, and my boyfriend and I have noticed that theyve gotten bigger.... The first thing I did was take 3 pregnancy tests, and they all came back negative, so I know Im not pregnant...
  14. M

    Mildly awkward question

    This is kind of embarrassing, but I had a question about breast development... lately my boobs have been super tender, and my boyfriend and I have noticed that theyve gotten bigger.... The first thing I did was take 3 pregnancy tests, and they all came back negative, so I know Im not pregnant...
  15. M

    Mildly awkward question

    This is kind of embarrassing, but I had a question about breast development... lately my boobs have been super tender, and my boyfriend and I have noticed that theyve gotten bigger.... The first thing I did was take 3 pregnancy tests, and they all came back negative, so I know Im not pregnant...
  16. M

    Mildly awkward question

    This is kind of embarrassing, but I had a question about breast development... lately my boobs have been super tender, and my boyfriend and I have noticed that theyve gotten bigger.... The first thing I did was take 3 pregnancy tests, and they all came back negative, so I know Im not pregnant...
  17. M

    Mildly awkward question

    This is kind of embarrassing, but I had a question about breast development... lately my boobs have been super tender, and my boyfriend and I have noticed that theyve gotten bigger.... The first thing I did was take 3 pregnancy tests, and they all came back negative, so I know Im not pregnant...
  18. M

    Ataluren-the drug that "fixes" the CF gene

    Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically...
  19. M

    Ataluren-the drug that "fixes" the CF gene

    Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically...
  20. M

    Ataluren-the drug that "fixes" the CF gene

    Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically...
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