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Are you over the median age (36.8)?
- Thread starter LouLou
- Start date
When Eileen shared about her siblings not knowing their mutations it got me to thinking....(can you see the smoke rolling out of my ears?) LOL
Anyway, wouldn't all siblings that share the same biological parents have the same mutations?
I guess another question that may answer my first question is....if you are carriers, do you carry only one gene mutation? Just something I've wondered, but never took the time to research.
Anyway, wouldn't all siblings that share the same biological parents have the same mutations?
I guess another question that may answer my first question is....if you are carriers, do you carry only one gene mutation? Just something I've wondered, but never took the time to research.
Lungboy911
New member
I was diagnosed at age 2. I have Delta F508 and some unknown mutation.
I was pretty healthy and very active with sports until my mid 20's. My first hospitalization was at age 26 although when I was 16 I got the flu, chicken pox and pneumonia in just 3 weeks. I probably should've gone to the hospital then, but mom got me healthy with many postural drainage (poundings) and antibiotics.
My FV1 really dropped in my early 30's and received a double lung transplant at age 35. I will be 38 in 17 days and have been playing hockey all my life. Even a year before my transplant, I was on the transplant list for 33 months. Thank God, for the new rules for CF'rs on the Transplant list. (No More Long Waits) We go to top of the list.
Only 3 months after transplant I was playing hockey again, and biked the Los Angeles Marathon 5 months after transplant.
I was pretty healthy and very active with sports until my mid 20's. My first hospitalization was at age 26 although when I was 16 I got the flu, chicken pox and pneumonia in just 3 weeks. I probably should've gone to the hospital then, but mom got me healthy with many postural drainage (poundings) and antibiotics.
My FV1 really dropped in my early 30's and received a double lung transplant at age 35. I will be 38 in 17 days and have been playing hockey all my life. Even a year before my transplant, I was on the transplant list for 33 months. Thank God, for the new rules for CF'rs on the Transplant list. (No More Long Waits) We go to top of the list.
Only 3 months after transplant I was playing hockey again, and biked the Los Angeles Marathon 5 months after transplant.
C
Cutecurlz
Guest
I am 38. diagnosed at 3 yrs old. Mutations? What are they and how do I find out mine?
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cutecurlz</b></i>
I am 38. diagnosed at 3 yrs old. Mutations? What are they and how do I find out mine?</end quote></div>
You should be able to find out from your CF clinic. They are the "type" of CF gene that you got from each parent!
I am 38. diagnosed at 3 yrs old. Mutations? What are they and how do I find out mine?</end quote></div>
You should be able to find out from your CF clinic. They are the "type" of CF gene that you got from each parent!
so if my son that is 5 and was just diagnosed 3 months ago only seems to have pancreatic problems but has no lung damage or problems would you think this would be milder or is he just to young to tell yet? he has delf508/n1303k
thank you.........mom of christian /5 with cf
thank you.........mom of christian /5 with cf
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
so if my son that is 5 and was just diagnosed 3 months ago only seems to have pancreatic problems but has no lung damage or problems would you think this would be milder or is he just to young to tell yet? he has delf508/n1303k
thank you.........mom of christian /5 with cf</end quote></div>
It's just so hard to say. I wish CF were more black/white, but it just isn't.
I would say that it's a good thing that he hasn't had any lung damage yet.
This would be a good question to run by your doctor the next time you're in.
so if my son that is 5 and was just diagnosed 3 months ago only seems to have pancreatic problems but has no lung damage or problems would you think this would be milder or is he just to young to tell yet? he has delf508/n1303k
thank you.........mom of christian /5 with cf</end quote></div>
It's just so hard to say. I wish CF were more black/white, but it just isn't.
I would say that it's a good thing that he hasn't had any lung damage yet.
This would be a good question to run by your doctor the next time you're in.
hardclubber
New member
Hi LouLou, very interesting topic. Thanks for putting that up. I find this always a difficult subject to understand.
I have delta F508 + mutation in exon 10 E528X.
First thing I understand, second no clue.
what I can say is that both my sister and i have same mutation. She had severe CF from birth and a double transplant in 1995. Still alive and kicking with 35 years!
I had mild/moderate CF sofar, now 30. So mutations tell half the story I think
I read some articles on stop mutations, but i don't know if the second one of my mutations is a stop mutation. If yes, there is some new hope, read this stuff on PTC124
<a target=_blank class=ftalternatingbarlinklarge href="http://www.fsp-info.de/neufsp/PTC124_background.pdf#search=%22PTC124%22
">http://www.fsp-info.de/neufsp/...f#search=%22PTC124%22
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
">http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
</a>
Regards
jeanpaul
I have delta F508 + mutation in exon 10 E528X.
First thing I understand, second no clue.
what I can say is that both my sister and i have same mutation. She had severe CF from birth and a double transplant in 1995. Still alive and kicking with 35 years!
I had mild/moderate CF sofar, now 30. So mutations tell half the story I think
I read some articles on stop mutations, but i don't know if the second one of my mutations is a stop mutation. If yes, there is some new hope, read this stuff on PTC124
<a target=_blank class=ftalternatingbarlinklarge href="http://www.fsp-info.de/neufsp/PTC124_background.pdf#search=%22PTC124%22
">http://www.fsp-info.de/neufsp/...f#search=%22PTC124%22
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
">http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
</a>
Regards
jeanpaul
hardclubber
New member
Hi LouLou, very interesting topic. Thanks for putting that up. I find this always a difficult subject to understand.
I have delta F508 + mutation in exon 10 E528X.
First thing I understand, second no clue.
what I can say is that both my sister and i have same mutation. She had severe CF from birth and a double transplant in 1995. Still alive and kicking with 35 years!
I had mild/moderate CF sofar, now 30. So mutations tell half the story I think
I read some articles on stop mutations, but i don't know if the second one of my mutations is a stop mutation. If yes, there is some new hope, read this stuff on PTC124
<a target=_blank class=ftalternatingbarlinklarge href="http://www.fsp-info.de/neufsp/PTC124_background.pdf#search=%22PTC124%22
">http://www.fsp-info.de/neufsp/...f#search=%22PTC124%22
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
">http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
</a>
Regards
jeanpaul
I have delta F508 + mutation in exon 10 E528X.
First thing I understand, second no clue.
what I can say is that both my sister and i have same mutation. She had severe CF from birth and a double transplant in 1995. Still alive and kicking with 35 years!
I had mild/moderate CF sofar, now 30. So mutations tell half the story I think
I read some articles on stop mutations, but i don't know if the second one of my mutations is a stop mutation. If yes, there is some new hope, read this stuff on PTC124
<a target=_blank class=ftalternatingbarlinklarge href="http://www.fsp-info.de/neufsp/PTC124_background.pdf#search=%22PTC124%22
">http://www.fsp-info.de/neufsp/...f#search=%22PTC124%22
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
">http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
</a>
Regards
jeanpaul
hardclubber
New member
Hi LouLou, very interesting topic. Thanks for putting that up. I find this always a difficult subject to understand.
I have delta F508 + mutation in exon 10 E528X.
First thing I understand, second no clue.
what I can say is that both my sister and i have same mutation. She had severe CF from birth and a double transplant in 1995. Still alive and kicking with 35 years!
I had mild/moderate CF sofar, now 30. So mutations tell half the story I think
I read some articles on stop mutations, but i don't know if the second one of my mutations is a stop mutation. If yes, there is some new hope, read this stuff on PTC124
<a target=_blank class=ftalternatingbarlinklarge href="http://www.fsp-info.de/neufsp/PTC124_background.pdf#search=%22PTC124%22
">http://www.fsp-info.de/neufsp/...f#search=%22PTC124%22
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
">http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
</a>
Regards
jeanpaul
I have delta F508 + mutation in exon 10 E528X.
First thing I understand, second no clue.
what I can say is that both my sister and i have same mutation. She had severe CF from birth and a double transplant in 1995. Still alive and kicking with 35 years!
I had mild/moderate CF sofar, now 30. So mutations tell half the story I think
I read some articles on stop mutations, but i don't know if the second one of my mutations is a stop mutation. If yes, there is some new hope, read this stuff on PTC124
<a target=_blank class=ftalternatingbarlinklarge href="http://www.fsp-info.de/neufsp/PTC124_background.pdf#search=%22PTC124%22
">http://www.fsp-info.de/neufsp/...f#search=%22PTC124%22
</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
">http://www.ptcbio.com/big/pdfs/faq-ptc124-april06.pdf
</a>
Regards
jeanpaul
Hi Everyone,<br>
I have Delta 508 and A455E. I was diagnosed 3 years ago at
age 33. So now I am now 36.2 yrs old.<br>
I would love to chat with anyone that has my mutations as I do not
know anyone else with the same ones. I always feel like a
pink and purple polka dotted dinosaur, because I am definately not
the norm as far a CFers go.<br>
So happy to have found this thread-I have learned so much!!!
Thanks.<br>
Best wishes<br>
Marcy
I have Delta 508 and A455E. I was diagnosed 3 years ago at
age 33. So now I am now 36.2 yrs old.<br>
I would love to chat with anyone that has my mutations as I do not
know anyone else with the same ones. I always feel like a
pink and purple polka dotted dinosaur, because I am definately not
the norm as far a CFers go.<br>
So happy to have found this thread-I have learned so much!!!
Thanks.<br>
Best wishes<br>
Marcy
Hi Everyone,<br>
I have Delta 508 and A455E. I was diagnosed 3 years ago at
age 33. So now I am now 36.2 yrs old.<br>
I would love to chat with anyone that has my mutations as I do not
know anyone else with the same ones. I always feel like a
pink and purple polka dotted dinosaur, because I am definately not
the norm as far a CFers go.<br>
So happy to have found this thread-I have learned so much!!!
Thanks.<br>
Best wishes<br>
Marcy
I have Delta 508 and A455E. I was diagnosed 3 years ago at
age 33. So now I am now 36.2 yrs old.<br>
I would love to chat with anyone that has my mutations as I do not
know anyone else with the same ones. I always feel like a
pink and purple polka dotted dinosaur, because I am definately not
the norm as far a CFers go.<br>
So happy to have found this thread-I have learned so much!!!
Thanks.<br>
Best wishes<br>
Marcy
Hi Everyone,<br>
I have Delta 508 and A455E. I was diagnosed 3 years ago at
age 33. So now I am now 36.2 yrs old.<br>
I would love to chat with anyone that has my mutations as I do not
know anyone else with the same ones. I always feel like a
pink and purple polka dotted dinosaur, because I am definately not
the norm as far a CFers go.<br>
So happy to have found this thread-I have learned so much!!!
Thanks.<br>
Best wishes<br>
Marcy
I have Delta 508 and A455E. I was diagnosed 3 years ago at
age 33. So now I am now 36.2 yrs old.<br>
I would love to chat with anyone that has my mutations as I do not
know anyone else with the same ones. I always feel like a
pink and purple polka dotted dinosaur, because I am definately not
the norm as far a CFers go.<br>
So happy to have found this thread-I have learned so much!!!
Thanks.<br>
Best wishes<br>
Marcy