Page 2 of 4 FirstFirst 1234 LastLast
Results 11 to 20 of 34

Thread: Anyone F508/D1152H?

  1. #11
    Super Moderator
    Join Date
    Jul 2007
    Posts
    2,077

    Anyone F508/D1152H?

    i don't actually have those mutations but just wanted to say that even though people have the same mutations their clinical outcomes can be completely different. so not to bring bad news or anything but your son may not turn out like cf23....
    i know for me i've had almost completely different progression of my cf than a couple others on this board with the exact same mutations...things like they are pancreatic sufficient and i'm not....so major differences.

    i hope your son continues in good health though! CF is all about prevention and aggressive PROACTIVE treatment rather than reactive <img src="i/expressions/face-icon-small-smile.gif" border="0">

  2. #12
    Super Moderator
    Join Date
    Jul 2007
    Posts
    2,077

    Anyone F508/D1152H?

    i don't actually have those mutations but just wanted to say that even though people have the same mutations their clinical outcomes can be completely different. so not to bring bad news or anything but your son may not turn out like cf23....
    i know for me i've had almost completely different progression of my cf than a couple others on this board with the exact same mutations...things like they are pancreatic sufficient and i'm not....so major differences.

    i hope your son continues in good health though! CF is all about prevention and aggressive PROACTIVE treatment rather than reactive <img src="i/expressions/face-icon-small-smile.gif" border="0">

  3. #13
    Super Moderator
    Join Date
    Jul 2007
    Posts
    2,077

    Anyone F508/D1152H?

    i don't actually have those mutations but just wanted to say that even though people have the same mutations their clinical outcomes can be completely different. so not to bring bad news or anything but your son may not turn out like cf23....
    i know for me i've had almost completely different progression of my cf than a couple others on this board with the exact same mutations...things like they are pancreatic sufficient and i'm not....so major differences.

    i hope your son continues in good health though! CF is all about prevention and aggressive PROACTIVE treatment rather than reactive <img src="i/expressions/face-icon-small-smile.gif" border="0">

  4. #14
    Super Moderator
    Join Date
    Jul 2007
    Posts
    2,077

    Anyone F508/D1152H?

    i don't actually have those mutations but just wanted to say that even though people have the same mutations their clinical outcomes can be completely different. so not to bring bad news or anything but your son may not turn out like cf23....
    i know for me i've had almost completely different progression of my cf than a couple others on this board with the exact same mutations...things like they are pancreatic sufficient and i'm not....so major differences.

    i hope your son continues in good health though! CF is all about prevention and aggressive PROACTIVE treatment rather than reactive <img src="i/expressions/face-icon-small-smile.gif" border="0">

  5. #15
    Super Moderator
    Join Date
    Jul 2007
    Posts
    2,077

    Anyone F508/D1152H?

    i don't actually have those mutations but just wanted to say that even though people have the same mutations their clinical outcomes can be completely different. so not to bring bad news or anything but your son may not turn out like cf23....
    <br />i know for me i've had almost completely different progression of my cf than a couple others on this board with the exact same mutations...things like they are pancreatic sufficient and i'm not....so major differences.
    <br />
    <br />i hope your son continues in good health though! CF is all about prevention and aggressive PROACTIVE treatment rather than reactive <img src="i/expressions/face-icon-small-smile.gif" border="0">

  6. #16
    Senior Member
    Join Date
    Oct 2007
    Posts
    2,256

    Anyone F508/D1152H?

    Just to echo Jaime a little, D1152H is actually considered a "widely variable" mutation. It is apparently class IV, which is a good sign and would typically place it in the "mild" mutation area. On the other hand, I found this article, which seems to suggest that it presents itself really uniquely in different patients:

    <a target=_blank class=ftalternatingbarlinklarge href="http://www3.interscience.wiley.com/journal/112231874/abstract?CRETRY=1&SRETRY=0
    ">http://www3.interscience.wiley...ETRY=1&SRETRY=0
    </a>

    Interestingly, this report does say that "all [adult patients studied with this mutation] have outlived the median life expectancy of CF." That's definitely good overall news! Personally I think the very best advice is to be proactive with treatments and prevention of infection and then to take hope based both on the advances in CF therapies and the overall research on your son's mutation.

    Maybe the report itself puts it best when it says "Hopefully, with early diagnosis and therapy, prognosis can be good."

  7. #17
    Senior Member
    Join Date
    Oct 2007
    Posts
    2,256

    Anyone F508/D1152H?

    Just to echo Jaime a little, D1152H is actually considered a "widely variable" mutation. It is apparently class IV, which is a good sign and would typically place it in the "mild" mutation area. On the other hand, I found this article, which seems to suggest that it presents itself really uniquely in different patients:

    <a target=_blank class=ftalternatingbarlinklarge href="http://www3.interscience.wiley.com/journal/112231874/abstract?CRETRY=1&SRETRY=0
    ">http://www3.interscience.wiley...ETRY=1&SRETRY=0
    </a>

    Interestingly, this report does say that "all [adult patients studied with this mutation] have outlived the median life expectancy of CF." That's definitely good overall news! Personally I think the very best advice is to be proactive with treatments and prevention of infection and then to take hope based both on the advances in CF therapies and the overall research on your son's mutation.

    Maybe the report itself puts it best when it says "Hopefully, with early diagnosis and therapy, prognosis can be good."

  8. #18
    Senior Member
    Join Date
    Oct 2007
    Posts
    2,256

    Anyone F508/D1152H?

    Just to echo Jaime a little, D1152H is actually considered a "widely variable" mutation. It is apparently class IV, which is a good sign and would typically place it in the "mild" mutation area. On the other hand, I found this article, which seems to suggest that it presents itself really uniquely in different patients:

    <a target=_blank class=ftalternatingbarlinklarge href="http://www3.interscience.wiley.com/journal/112231874/abstract?CRETRY=1&SRETRY=0
    ">http://www3.interscience.wiley...ETRY=1&SRETRY=0
    </a>

    Interestingly, this report does say that "all [adult patients studied with this mutation] have outlived the median life expectancy of CF." That's definitely good overall news! Personally I think the very best advice is to be proactive with treatments and prevention of infection and then to take hope based both on the advances in CF therapies and the overall research on your son's mutation.

    Maybe the report itself puts it best when it says "Hopefully, with early diagnosis and therapy, prognosis can be good."

  9. #19
    Senior Member
    Join Date
    Oct 2007
    Posts
    2,256

    Anyone F508/D1152H?

    Just to echo Jaime a little, D1152H is actually considered a "widely variable" mutation. It is apparently class IV, which is a good sign and would typically place it in the "mild" mutation area. On the other hand, I found this article, which seems to suggest that it presents itself really uniquely in different patients:

    <a target=_blank class=ftalternatingbarlinklarge href="http://www3.interscience.wiley.com/journal/112231874/abstract?CRETRY=1&SRETRY=0
    ">http://www3.interscience.wiley...ETRY=1&SRETRY=0
    </a>

    Interestingly, this report does say that "all [adult patients studied with this mutation] have outlived the median life expectancy of CF." That's definitely good overall news! Personally I think the very best advice is to be proactive with treatments and prevention of infection and then to take hope based both on the advances in CF therapies and the overall research on your son's mutation.

    Maybe the report itself puts it best when it says "Hopefully, with early diagnosis and therapy, prognosis can be good."

  10. #20
    Senior Member
    Join Date
    Oct 2007
    Posts
    2,256

    Anyone F508/D1152H?

    Just to echo Jaime a little, D1152H is actually considered a "widely variable" mutation. It is apparently class IV, which is a good sign and would typically place it in the "mild" mutation area. On the other hand, I found this article, which seems to suggest that it presents itself really uniquely in different patients:
    <br />
    <br /><a target=_blank class=ftalternatingbarlinklarge href="http://www3.interscience.wiley.com/journal/112231874/abstract?CRETRY=1&SRETRY=0
    <br />">http://www3.interscience.wiley...ETRY=1&SRETRY=0
    <br /></a>
    <br />
    <br />Interestingly, this report does say that "all [adult patients studied with this mutation] have outlived the median life expectancy of CF." That's definitely good overall news! Personally I think the very best advice is to be proactive with treatments and prevention of infection and then to take hope based both on the advances in CF therapies and the overall research on your son's mutation.
    <br />
    <br />Maybe the report itself puts it best when it says "Hopefully, with early diagnosis and therapy, prognosis can be good."

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •