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Anyone F508/D1152H?
- Thread starter breathe22
- Start date
C
cf23
Guest
I hope that your son is doing well! I too have F508/D1152H. I am 22 years old, have graduated from college, and am employed full-time!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
C
cf23
Guest
I hope that your son is doing well! I too have F508/D1152H. I am 22 years old, have graduated from college, and am employed full-time!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
C
cf23
Guest
I hope that your son is doing well! I too have F508/D1152H. I am 22 years old, have graduated from college, and am employed full-time!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
C
cf23
Guest
I hope that your son is doing well! I too have F508/D1152H. I am 22 years old, have graduated from college, and am employed full-time!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
C
cf23
Guest
I hope that your son is doing well! I too have F508/D1152H. I am 22 years old, have graduated from college, and am employed full-time!
<br />
<br />I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
<br />
<br />I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
<br />
<br />Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
<br />
<br />I have had sinus infections basically continuously since preschool, and I started having problems with frequent acute pancreatitis attacks in my adolescent years. I have also had more lung issues than most people, but I am nowhere near the point of needing a transplant or anything. I am often frustrated with the illness, but my life has been pretty normal! My social life has been only minimally affected. I played sports throughout my school years (and still work out regularly), and I graduated from college right on time!
<br />
<br />I see a variety of doctors regularly. I am on a variety of maintenance medicines, I am almost constantly on antibiotics, and I have to use a nebulizer and a cappella twice daily. However, I have no complaints. I realize that I am faring much better than most with CF, and I hope that the fact that your child and I have the same mutations means that your child will fare as well as I have!
<br />
<br />Please feel free to post back with questions. Or post your email address, and I'll email you if you have further questions!
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">
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">
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">
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">
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">
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">
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">
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">
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">
<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">
NYCLawGirl
New member
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."
<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."
NYCLawGirl
New member
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."
<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."
NYCLawGirl
New member
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."
<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."
NYCLawGirl
New member
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."
<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."
NYCLawGirl
New member
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."
<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."