Symptomatic Carriers

[jjflash]

I've been reading posts that mention carriers having sinus and lung symptoms also and was wondering if anyone had researched this or talked to their doctor.

This really worried me, because I thought we had really addressed the issue when we had my husband tested through Ambry Amplified and he was not a carrier, but if carriers have CF symptoms then I'm not sure I should have a child that carries EITHER of my 7th chromosomes.

It's unclear to me whether the carriers have these symptoms at a higher rater than the general population or whether their symptoms just get noted more due to their relationship to a CFer. Is there any clear research looking at this or is it all just anecdotal?

I guess I'm also just looking for opinions. Do you think this issue is worth thinking about or are there enough other possible problems and things that you haven't worried about it in your own family's decision to have a child?

Thanks!

 

[jjflash]

I've been reading posts that mention carriers having sinus and lung symptoms also and was wondering if anyone had researched this or talked to their doctor.

This really worried me, because I thought we had really addressed the issue when we had my husband tested through Ambry Amplified and he was not a carrier, but if carriers have CF symptoms then I'm not sure I should have a child that carries EITHER of my 7th chromosomes.

It's unclear to me whether the carriers have these symptoms at a higher rater than the general population or whether their symptoms just get noted more due to their relationship to a CFer. Is there any clear research looking at this or is it all just anecdotal?

I guess I'm also just looking for opinions. Do you think this issue is worth thinking about or are there enough other possible problems and things that you haven't worried about it in your own family's decision to have a child?

Thanks!

 

[jjflash]

I've been reading posts that mention carriers having sinus and lung symptoms also and was wondering if anyone had researched this or talked to their doctor.

This really worried me, because I thought we had really addressed the issue when we had my husband tested through Ambry Amplified and he was not a carrier, but if carriers have CF symptoms then I'm not sure I should have a child that carries EITHER of my 7th chromosomes.

It's unclear to me whether the carriers have these symptoms at a higher rater than the general population or whether their symptoms just get noted more due to their relationship to a CFer. Is there any clear research looking at this or is it all just anecdotal?

I guess I'm also just looking for opinions. Do you think this issue is worth thinking about or are there enough other possible problems and things that you haven't worried about it in your own family's decision to have a child?

Thanks!

 

[wanderlost]

I am not sure what studies have been done on symptomatic carriers, but I can say, as is the case in my family, and as I was told by an ENT, that Cf carriers often have a lot of sinus issues. I have also heard something about male carriers not being able to concieve becasue of the same problem with the vas deferens that Cf males often have - but how much of this is scientifically documented, I do not know. I would say that a symptomatic carrier still would not have Cf, so therefore , if you had children that were symptomatic, it might just mean that they were more susceptible to sinus headaches, etc. They would not suffer from CF.

 

[wanderlost]

I am not sure what studies have been done on symptomatic carriers, but I can say, as is the case in my family, and as I was told by an ENT, that Cf carriers often have a lot of sinus issues. I have also heard something about male carriers not being able to concieve becasue of the same problem with the vas deferens that Cf males often have - but how much of this is scientifically documented, I do not know. I would say that a symptomatic carrier still would not have Cf, so therefore , if you had children that were symptomatic, it might just mean that they were more susceptible to sinus headaches, etc. They would not suffer from CF.

 

[wanderlost]

I am not sure what studies have been done on symptomatic carriers, but I can say, as is the case in my family, and as I was told by an ENT, that Cf carriers often have a lot of sinus issues. I have also heard something about male carriers not being able to concieve becasue of the same problem with the vas deferens that Cf males often have - but how much of this is scientifically documented, I do not know. I would say that a symptomatic carrier still would not have Cf, so therefore , if you had children that were symptomatic, it might just mean that they were more susceptible to sinus headaches, etc. They would not suffer from CF.

 

[JazzysMom]

I dont know about the documented aspect of this, but can I just toss something into this. IF CF was never in the picture at all & the potential carrier showed the same symptoms, it would be thought of as allergies or sinuses etc....no more no less. As Wanderlost said...having symptoms & having CF is quite different.

 

[JazzysMom]

I dont know about the documented aspect of this, but can I just toss something into this. IF CF was never in the picture at all & the potential carrier showed the same symptoms, it would be thought of as allergies or sinuses etc....no more no less. As Wanderlost said...having symptoms & having CF is quite different.

 

[JazzysMom]

I dont know about the documented aspect of this, but can I just toss something into this. IF CF was never in the picture at all & the potential carrier showed the same symptoms, it would be thought of as allergies or sinuses etc....no more no less. As Wanderlost said...having symptoms & having CF is quite different.

 

[Augustmom0003]

Hey everyone. So, I am one of those that truly believe carriers have symptoms. I have had stomach, sinus and lung (extremely mild) issues all of my life and I'm obviously a carrier. Most of my friends, my husband and my daughter all have issues (all carriers). But, with that said, in my opinion it's NEVER, EVER been bad enough to cause ANY kind of major problems. Just irritating at most. As I've gotten older, my lungs have been a LITTLE more of a bother (cleaning solvents and minty things irritate them and make me cough) and when I get a cold...it seems it hits my airways a little harder than it used to. Is it from being a carrier or not taking care of myself the way I should? Don't know for sure, it's really not that big of a scare or issue. If having a child and it being a carrier is your worry...I wouldn't. He or she will be lucky to have such a good mommy (already worrying about him/her)!!! <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Good luck!!!!!!!!!!!

 

[Augustmom0003]

Hey everyone. So, I am one of those that truly believe carriers have symptoms. I have had stomach, sinus and lung (extremely mild) issues all of my life and I'm obviously a carrier. Most of my friends, my husband and my daughter all have issues (all carriers). But, with that said, in my opinion it's NEVER, EVER been bad enough to cause ANY kind of major problems. Just irritating at most. As I've gotten older, my lungs have been a LITTLE more of a bother (cleaning solvents and minty things irritate them and make me cough) and when I get a cold...it seems it hits my airways a little harder than it used to. Is it from being a carrier or not taking care of myself the way I should? Don't know for sure, it's really not that big of a scare or issue. If having a child and it being a carrier is your worry...I wouldn't. He or she will be lucky to have such a good mommy (already worrying about him/her)!!! <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Good luck!!!!!!!!!!!

 

[Augustmom0003]

Hey everyone. So, I am one of those that truly believe carriers have symptoms. I have had stomach, sinus and lung (extremely mild) issues all of my life and I'm obviously a carrier. Most of my friends, my husband and my daughter all have issues (all carriers). But, with that said, in my opinion it's NEVER, EVER been bad enough to cause ANY kind of major problems. Just irritating at most. As I've gotten older, my lungs have been a LITTLE more of a bother (cleaning solvents and minty things irritate them and make me cough) and when I get a cold...it seems it hits my airways a little harder than it used to. Is it from being a carrier or not taking care of myself the way I should? Don't know for sure, it's really not that big of a scare or issue. If having a child and it being a carrier is your worry...I wouldn't. He or she will be lucky to have such a good mommy (already worrying about him/her)!!! <img src="i/expressions/face-icon-small-blush.gif" border="0">)

Good luck!!!!!!!!!!!

 

[Scarlett81]

I do believe that carriers have pulmonary related symptoms-but this seems to be more of a nusiance for them to live with than a real serious issue of life and death like cf, so no I wouldn't worry about that at all with your family.
I absolutely feel that carriers have symptoms. Every carrier in my family has chronic sinus problems, or chronic asthma. My aunt who is a carrier but has no cf kids, has serious sinus issues-she just had polyps removed and a deviated septum fixed, she uses albuterol every day for her asthma and she has severe allergies. I have been around her and she even gets the laughing cough that we cfers get-y'all know what I'm talking about. But no, she definately doesn't have cf!
my cousins have similar symptoms, but none as severe as my aunt. I also have a friend-no relation-that is a carrier and has BAD respiratory illness, he uses nebs every day, and he has no vas deferens. But he only has one copy of the gene.

It would be fascinating for them to do a study on this. I'd love to see the results.

 

[Scarlett81]

I do believe that carriers have pulmonary related symptoms-but this seems to be more of a nusiance for them to live with than a real serious issue of life and death like cf, so no I wouldn't worry about that at all with your family.
I absolutely feel that carriers have symptoms. Every carrier in my family has chronic sinus problems, or chronic asthma. My aunt who is a carrier but has no cf kids, has serious sinus issues-she just had polyps removed and a deviated septum fixed, she uses albuterol every day for her asthma and she has severe allergies. I have been around her and she even gets the laughing cough that we cfers get-y'all know what I'm talking about. But no, she definately doesn't have cf!
my cousins have similar symptoms, but none as severe as my aunt. I also have a friend-no relation-that is a carrier and has BAD respiratory illness, he uses nebs every day, and he has no vas deferens. But he only has one copy of the gene.

It would be fascinating for them to do a study on this. I'd love to see the results.

 

[Scarlett81]

I do believe that carriers have pulmonary related symptoms-but this seems to be more of a nusiance for them to live with than a real serious issue of life and death like cf, so no I wouldn't worry about that at all with your family.
I absolutely feel that carriers have symptoms. Every carrier in my family has chronic sinus problems, or chronic asthma. My aunt who is a carrier but has no cf kids, has serious sinus issues-she just had polyps removed and a deviated septum fixed, she uses albuterol every day for her asthma and she has severe allergies. I have been around her and she even gets the laughing cough that we cfers get-y'all know what I'm talking about. But no, she definately doesn't have cf!
my cousins have similar symptoms, but none as severe as my aunt. I also have a friend-no relation-that is a carrier and has BAD respiratory illness, he uses nebs every day, and he has no vas deferens. But he only has one copy of the gene.

It would be fascinating for them to do a study on this. I'd love to see the results.

 

[mom2lillian]

I would also LOVE to see a study on this. Before there was much info published on symptomatic carriers I mentioned to my doctor about it and she agreed it was possible and wondered with me about it. Then I started reading stuff about it. Both my sisters have diabetes and both my parents have sinus issues plus asthma runs in the family as do allergies.

I would also say to go ahead and have kids even if they will be carriers though of course this is your own personal choice. There are far worse things than being a carrier that your kids can get and most carriers aren't really badly affected if at all. You can't possibly worry about or prevent all of these other itemsthat thye could also get so the chance that they might be a symptomatic carrier is right along with the possiblity that they might get any one of those things--I am having a hard time explainign what I am thinking so perhaps I should leave it at that?

Alas I also believe alot of symptomatic carriers especially the males missing the vas def and others that are more severe may be CF very mild that we dont know about yet. I would have been considered a symptomatic carrier for years as I always had so many issues with lungs bronchitis allergies ashtma finally it got bad enough that thye diagnosed me with CF based purely on symptoms and then 3 years after my DX they ran my genes through ambry again and found my 2nd mutation. At this point one of my mutations has only been documented a handful of times and that was due to a study in IrelandI believe that tested a large population. I am P67L and E60x.

 

[mom2lillian]

I would also LOVE to see a study on this. Before there was much info published on symptomatic carriers I mentioned to my doctor about it and she agreed it was possible and wondered with me about it. Then I started reading stuff about it. Both my sisters have diabetes and both my parents have sinus issues plus asthma runs in the family as do allergies.

I would also say to go ahead and have kids even if they will be carriers though of course this is your own personal choice. There are far worse things than being a carrier that your kids can get and most carriers aren't really badly affected if at all. You can't possibly worry about or prevent all of these other itemsthat thye could also get so the chance that they might be a symptomatic carrier is right along with the possiblity that they might get any one of those things--I am having a hard time explainign what I am thinking so perhaps I should leave it at that?

Alas I also believe alot of symptomatic carriers especially the males missing the vas def and others that are more severe may be CF very mild that we dont know about yet. I would have been considered a symptomatic carrier for years as I always had so many issues with lungs bronchitis allergies ashtma finally it got bad enough that thye diagnosed me with CF based purely on symptoms and then 3 years after my DX they ran my genes through ambry again and found my 2nd mutation. At this point one of my mutations has only been documented a handful of times and that was due to a study in IrelandI believe that tested a large population. I am P67L and E60x.

 

[mom2lillian]

I would also LOVE to see a study on this. Before there was much info published on symptomatic carriers I mentioned to my doctor about it and she agreed it was possible and wondered with me about it. Then I started reading stuff about it. Both my sisters have diabetes and both my parents have sinus issues plus asthma runs in the family as do allergies.

I would also say to go ahead and have kids even if they will be carriers though of course this is your own personal choice. There are far worse things than being a carrier that your kids can get and most carriers aren't really badly affected if at all. You can't possibly worry about or prevent all of these other itemsthat thye could also get so the chance that they might be a symptomatic carrier is right along with the possiblity that they might get any one of those things--I am having a hard time explainign what I am thinking so perhaps I should leave it at that?

Alas I also believe alot of symptomatic carriers especially the males missing the vas def and others that are more severe may be CF very mild that we dont know about yet. I would have been considered a symptomatic carrier for years as I always had so many issues with lungs bronchitis allergies ashtma finally it got bad enough that thye diagnosed me with CF based purely on symptoms and then 3 years after my DX they ran my genes through ambry again and found my 2nd mutation. At this point one of my mutations has only been documented a handful of times and that was due to a study in IrelandI believe that tested a large population. I am P67L and E60x.

 

[usedtobeinca]

I'd heard bits and pieces about this - pretty interesting. My wife and I are carriers and I've always had sinus problems, had chronic bronchitis and didn't eat or gain weight well as a baby, and have dealt with intestinal issues (officially IBS C/D) for about a decade. Also interesting that sinus problems, asthma, unusually thick mucous and bowel problems run in my family. Same to a lesser degree on my wife's side. Huh.

At the same time, JazzysMom's comment is extremely valid. We need to be sure not to make unproven linkages here by creating order where there is none in seeing what we want to see (as is human nature). I'd also be ashamed to term my experiences as anything other than minor inconveniences in comparison to cf.

We didn't find out we were carriers until prenatal testing post-conception. I wouldn't be worried about passing the 'carrier' trait so much as doing nothing to avoid having a second child with cf. My wife and I are currently struggling with deciding how to proceed with our family plans as we've always seen ourselves with 2-3 children but do not want to roll the genetic dice now that we know we're both carriers (IVF or adoption are probably our choices).

 

[usedtobeinca]

I'd heard bits and pieces about this - pretty interesting. My wife and I are carriers and I've always had sinus problems, had chronic bronchitis and didn't eat or gain weight well as a baby, and have dealt with intestinal issues (officially IBS C/D) for about a decade. Also interesting that sinus problems, asthma, unusually thick mucous and bowel problems run in my family. Same to a lesser degree on my wife's side. Huh.

At the same time, JazzysMom's comment is extremely valid. We need to be sure not to make unproven linkages here by creating order where there is none in seeing what we want to see (as is human nature). I'd also be ashamed to term my experiences as anything other than minor inconveniences in comparison to cf.

We didn't find out we were carriers until prenatal testing post-conception. I wouldn't be worried about passing the 'carrier' trait so much as doing nothing to avoid having a second child with cf. My wife and I are currently struggling with deciding how to proceed with our family plans as we've always seen ourselves with 2-3 children but do not want to roll the genetic dice now that we know we're both carriers (IVF or adoption are probably our choices).