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  1. H

    CF Granddaughter: basic question

    DF508 is also tested for on every single panel test~ any test the dr orders (i.e. the cheap 37 mutation panels) will always include that one. In our case as well, that's the gene I carry and it's so much easier to catch that one than some obscure one requiring expensive testing. It's tough in...
  2. H

    Looking for some Info for a friend

    I completely agree, Caitlyn. Comprehensive testing is important in the interest of being fully informed- if it turned out both parents are carriers and they didn't want to find out during pregnancy if the baby had cf, they could still choose to deliver at a hospital that can take care of...
  3. H

    Looking for some Info for a friend

    I completely agree, Caitlyn. Comprehensive testing is important in the interest of being fully informed- if it turned out both parents are carriers and they didn't want to find out during pregnancy if the baby had cf, they could still choose to deliver at a hospital that can take care of...
  4. H

    Looking for some Info for a friend

    I completely agree, Caitlyn. Comprehensive testing is important in the interest of being fully informed- if it turned out both parents are carriers and they didn't want to find out during pregnancy if the baby had cf, they could still choose to deliver at a hospital that can take care of...
  5. H

    XRAY yields "changes" yet seldom coughs

    XRAY yields Hooray for good news! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Glad the Pulmozyme has been helping and you were able to see tangible evidence! Emily's pft's have consistently been about 10% higher in the year+ she's been on it vs. the numbers she had before...
  6. H

    XRAY yields "changes" yet seldom coughs

    XRAY yields Hooray for good news! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Glad the Pulmozyme has been helping and you were able to see tangible evidence! Emily's pft's have consistently been about 10% higher in the year+ she's been on it vs. the numbers she had before...
  7. H

    XRAY yields "changes" yet seldom coughs

    XRAY yields Hooray for good news! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <br /> <br />Glad the Pulmozyme has been helping and you were able to see tangible evidence! Emily's pft's have consistently been about 10% higher in the year+ she's been on it vs. the numbers she...
  8. H

    Looking for some Info for a friend

    Well, the only issue with waiting and testing the baby after birth rather than the husband is if that baby doesn't have cf, it still doesn't answer whether or not the father is a carrier. If the father is tested, they will know with a pretty high degree of certainty what testing would be needed...
  9. H

    Looking for some Info for a friend

    Well, the only issue with waiting and testing the baby after birth rather than the husband is if that baby doesn't have cf, it still doesn't answer whether or not the father is a carrier. If the father is tested, they will know with a pretty high degree of certainty what testing would be needed...
  10. H

    Looking for some Info for a friend

    Well, the only issue with waiting and testing the baby after birth rather than the husband is if that baby doesn't have cf, it still doesn't answer whether or not the father is a carrier. If the father is tested, they will know with a pretty high degree of certainty what testing would be needed...
  11. H

    in reference to urgent message to worried grandma and candi81

    If you check my highlighted link: Hopkins is a very reputable, accredited CF center. According to our center, they take an interest in rare mutation cases. This was a research study they carried out several years ago re. rare mutations and so-called nonclassic presentations of CF. The site...
  12. H

    in reference to urgent message to worried grandma and candi81

    If you check my highlighted link: Hopkins is a very reputable, accredited CF center. According to our center, they take an interest in rare mutation cases. This was a research study they carried out several years ago re. rare mutations and so-called nonclassic presentations of CF. The site...
  13. H

    in reference to urgent message to worried grandma and candi81

    If you check my highlighted link: Hopkins is a very reputable, accredited CF center. According to our center, they take an interest in rare mutation cases. This was a research study they carried out several years ago re. rare mutations and so-called nonclassic presentations of CF. The site...
  14. H

    in reference to urgent message to worried grandma and candi81

    There is a case hx on the Hopkins database of a man dx'ed in his early 30's with this combo of mutations. He has a hx of cbavd, pancreatitis, sinusitis, colonization with pseudomonas and positive sweat test. <a target=_blank class=ftalternatingbarlinklarge...
  15. H

    in reference to urgent message to worried grandma and candi81

    There is a case hx on the Hopkins database of a man dx'ed in his early 30's with this combo of mutations. He has a hx of cbavd, pancreatitis, sinusitis, colonization with pseudomonas and positive sweat test. <a target=_blank class=ftalternatingbarlinklarge...
  16. H

    in reference to urgent message to worried grandma and candi81

    There is a case hx on the Hopkins database of a man dx'ed in his early 30's with this combo of mutations. He has a hx of cbavd, pancreatitis, sinusitis, colonization with pseudomonas and positive sweat test. <br /> <br /><a target=_blank class=ftalternatingbarlinklarge...
  17. H

    in reference to urgent message to worried grandma and candi81

    SIX MONTHS OLD and withdrawing a dx based on no symptoms to date? I'd venture to guess a large proportion of people here on this website here were quite healthy at age 6mo, even with known, disease causing mutations! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> This really...
  18. H

    in reference to urgent message to worried grandma and candi81

    SIX MONTHS OLD and withdrawing a dx based on no symptoms to date? I'd venture to guess a large proportion of people here on this website here were quite healthy at age 6mo, even with known, disease causing mutations! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> This really...
  19. H

    in reference to urgent message to worried grandma and candi81

    SIX MONTHS OLD and withdrawing a dx based on no symptoms to date? I'd venture to guess a large proportion of people here on this website here were quite healthy at age 6mo, even with known, disease causing mutations! <img src="i/expressions/face-icon-small-shocked.gif" border="0"> This really...
  20. H

    Looking for some Info for a friend

    If someone is contemplating pregnancy and one of the parents is a KNOWN carrier, than it's important the other prospective parent get full genetic sequencing to determine with the greatest degree of certainty whether or not he/she's a carrier. That way they can make the most informed choice...
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