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both parents with CF
- Thread starter Renee
- Start date
Hello Renee,
I think it is probably quite a rare occurence. If you are speaking for yourself, do you know if your significant other is sterile? I believe if you both have CF, your child will have CF too since you both are carrying two recessive gene mutations. Take care -
ETA: Unless you are using donor egg or sperm then the chance for a CF child is reduced though the baby would be a carrier if you used either of your genetic material (egg/sperm).
I think it is probably quite a rare occurence. If you are speaking for yourself, do you know if your significant other is sterile? I believe if you both have CF, your child will have CF too since you both are carrying two recessive gene mutations. Take care -
ETA: Unless you are using donor egg or sperm then the chance for a CF child is reduced though the baby would be a carrier if you used either of your genetic material (egg/sperm).
K
Keepercjr
Guest
I heard about a family from Puerto Rico who had twins with CF - after the twins were diagnosed with CF the parents started realizing that the health problems they had always had (for the mom, lung, for the dad, digestive) were consistent with CF and they both were eventually diagnosed with CF. Pretty crazy!
But like Christina said, if both parents have CF and they conceive with their own egg and sperm, the child will 100% have CF. I know of a few couples were both partners had CF but none of them had kids.
But like Christina said, if both parents have CF and they conceive with their own egg and sperm, the child will 100% have CF. I know of a few couples were both partners had CF but none of them had kids.
lakegirl1915
New member
I know this isnt on the baby topic. But I just wanted to ask a question. How can 2 people with CF live together. They wont let you get close in the hospital because they are scared you will give each other germs. So how do you live together?
lakegirl1915
New member
I know this isnt on the baby topic. But I just wanted to ask a question. How can 2 people with CF live together. They wont let you get close in the hospital because they are scared you will give each other germs. So how do you live together?
crystalina0814
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lakegirl1915</b></i>
I know this isnt on the baby topic. But I just wanted to ask a question. How can 2 people with CF live together. They wont let you get close in the hospital because they are scared you will give each other germs. So how do you live together?</end quote>
I would guess it would be the same way siblings with CF live together. You still have to take precautions with sterilizing, etc. But I would think that they would share the same germs.
I know this isnt on the baby topic. But I just wanted to ask a question. How can 2 people with CF live together. They wont let you get close in the hospital because they are scared you will give each other germs. So how do you live together?</end quote>
I would guess it would be the same way siblings with CF live together. You still have to take precautions with sterilizing, etc. But I would think that they would share the same germs.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lakegirl1915</b></i>
I know this isnt on the baby topic. But I just wanted to ask a question. How can 2 people with CF live together. They wont let you get close in the hospital because they are scared you will give each other germs. So how do you live together?</end quote></div>
Who's going to stop them ?
I know this isnt on the baby topic. But I just wanted to ask a question. How can 2 people with CF live together. They wont let you get close in the hospital because they are scared you will give each other germs. So how do you live together?</end quote></div>
Who's going to stop them ?
I run into this thread so i bring it up. If two people with Cf decided to have children together would IVF be an option? I know its not illegal , but strongly frowned upon. Could a doctor possibly refuse to do that?
Im having these thoughts because we are entering a new era on Cf and a lot of things we took as granted, change today. IVF for Cf people in now an option for parenting but do ethics get in the way?
Im having these thoughts because we are entering a new era on Cf and a lot of things we took as granted, change today. IVF for Cf people in now an option for parenting but do ethics get in the way?
W
welshwitch
Guest
Crazy question, but a good one! Nothing to add here, except that the baby would have a 100% chance of being born w. CF. But, maybe in 100 years CF will be a completely different disease and this will be something that happens!
B
BreathinSteven
Guest
I agree with pretty much all of the responses here... If a child were conceived between two CF people, the child would have CF - though I don't know which mutations would end up with the child... That being said - my understanding is that fertility can be difficult for both the female and male - I believe I've heard about CF women going through extensive care to conceive - I believe that the mucus ain't the friendliest place for conception, implantation and whatnot. But, we've all known a number of CF women who have successfully given birth...
A strong majority of CF men are sterile - I've heard upwards of 90% - due to a disconnect in the vas deferens... I've also heard of CF males who have had sperm harvested and have successfully had children (though those I've heard of have always had a non-CF spouse/mate...) We're not failing in the production of sperm - rather in the delivery...
lakegirl brought up that they won't let us near one another in the hospital, so how can two get together??? As someone else pointed out - often siblings have CF, but also - not allowing us near one another is a relatively new thing, with the "popularity" of cepacia and MRSA and other bugs... I hate sounding old (but it's good that I am...) we all hung out in one another's rooms in the hospital - we hung out at CF camps - we were very physically social creatures (before the internet, for those who don't know that "before the internets" existed!) The internet has been a wonderful boon to allow us to communicate with one another, and be close to one another, without physical contact and swapping bugs... I think in those days, a fair number of us developed closer relationships - but we also didn't live as long...
As for what welshwitch mentioned - I think it will take less than 100 years before CF is a completely different disease - the new drugs out and in the pipeline will likely have a drastic impact on that in the near future... Since I was diagnosed, I've been told a cure or viable treatment was "just around the corner" - that was almost 40 years ago - it really got loud when they found the genetics - that was in the 80s - I've kinda gotten numb to "it's just around the corner"... This is the first time that I'm kinda excited (for others) about the "just around the corner" idea...
Love, steve
A strong majority of CF men are sterile - I've heard upwards of 90% - due to a disconnect in the vas deferens... I've also heard of CF males who have had sperm harvested and have successfully had children (though those I've heard of have always had a non-CF spouse/mate...) We're not failing in the production of sperm - rather in the delivery...
lakegirl brought up that they won't let us near one another in the hospital, so how can two get together??? As someone else pointed out - often siblings have CF, but also - not allowing us near one another is a relatively new thing, with the "popularity" of cepacia and MRSA and other bugs... I hate sounding old (but it's good that I am...) we all hung out in one another's rooms in the hospital - we hung out at CF camps - we were very physically social creatures (before the internet, for those who don't know that "before the internets" existed!) The internet has been a wonderful boon to allow us to communicate with one another, and be close to one another, without physical contact and swapping bugs... I think in those days, a fair number of us developed closer relationships - but we also didn't live as long...
As for what welshwitch mentioned - I think it will take less than 100 years before CF is a completely different disease - the new drugs out and in the pipeline will likely have a drastic impact on that in the near future... Since I was diagnosed, I've been told a cure or viable treatment was "just around the corner" - that was almost 40 years ago - it really got loud when they found the genetics - that was in the 80s - I've kinda gotten numb to "it's just around the corner"... This is the first time that I'm kinda excited (for others) about the "just around the corner" idea...
Love, steve
CrisDopher
New member
Steve, re: "just around the corner" I'm in complete agreement with your view on that. I take care not to sue the C word around people w/ CF or their caregivers, because I don't believe such a thing will exist in my (or their) lifetimes. BUT... if we can continue to devise drugs like VX770 AND combine that with earliest possible diagnosis AND early intervention AND lifelong multiple-avenue treatment (i.e. correction drugs, exercise, mucous thinners, regular checkups, and antibiotics as necessary) ---- THEN we may have finally enabled the next generation born w/ CF to routinely live normal lifespans. I know that's a lot of qualifications - but I also think that's the realistic view of it.
B
BreathinSteven
Guest
I agree with you CrisDopher - pretty much completely... The people with layman's knowledge of CF generally have their undies in a bunch about lungs, though some of them are aware of the digestive aspect - but the condition is very complex. I too think a "cure" is not in the foreseeable future - but I think a viable treatment will be - and really, in my eyes that would be sufficient. Getting us to live "normal" lifespans would be a pretty incredible leap - and living them comfortably and with the same effort "normal" people experience would be rather awesome...
Because I knew CF was genetic - and basically coded into every cell in our body - and impacting many more functions beyond breathing, I'd always looked at a viable treatment as the "cure" I was looking for...
I have new lungs now - I've had them for 12+ years - I never imagined breathing could feel this amazing. I never had a frame or reference for this. I would LOVE for all CF patients to experience this. I also know that lung transplant is not the answer for CF. Frankly - we lung recipients, on average, just don't live that long. Most of us are transplanted in our late teens to early twenties - giving a 19-year-old ten more years is not a cure... Also - based on just the numbers of CF sufferors in the US - a few thousand of us die each year. Every year there are around 1500 lung transplants, probably 200-300 of those go to CF patients. Probably 10% of CF patients are eligible for or receive lung transplants, so transplant is obviously not an answer (though, it's pretty damn nice for those of us who get it...)
I think you're right - that with the drugs out there and in the pipeline may be a big step in the right direction of having the next generation lead a "normal" lifespan... You take care... Love, Steve
Because I knew CF was genetic - and basically coded into every cell in our body - and impacting many more functions beyond breathing, I'd always looked at a viable treatment as the "cure" I was looking for...
I have new lungs now - I've had them for 12+ years - I never imagined breathing could feel this amazing. I never had a frame or reference for this. I would LOVE for all CF patients to experience this. I also know that lung transplant is not the answer for CF. Frankly - we lung recipients, on average, just don't live that long. Most of us are transplanted in our late teens to early twenties - giving a 19-year-old ten more years is not a cure... Also - based on just the numbers of CF sufferors in the US - a few thousand of us die each year. Every year there are around 1500 lung transplants, probably 200-300 of those go to CF patients. Probably 10% of CF patients are eligible for or receive lung transplants, so transplant is obviously not an answer (though, it's pretty damn nice for those of us who get it...)
I think you're right - that with the drugs out there and in the pipeline may be a big step in the right direction of having the next generation lead a "normal" lifespan... You take care... Love, Steve
MattNAdriannasMommy
New member
When I was diagnosed at 13, I was told that I wouldn't be able to get pregnant. I kinda wish I could "chat" with that dr now, because it isn't the smartest thing to tell a teenage girl- and I had my first baby 3 years later. Apparently not all CF women have major problems getting pregnant. Carrying is another story, as it is very hard on the body. Before I had my daughter (my 2nd baby), my FEV1 was up in the 60s. Now we are pretty happy when its in the 40s. I was told to plan on pregnancy knocking a good 20% off your FEV1- that you may or may not be able to reclaim.
There are still programs and events for CF people. They just aren't as common. In hospitals, they typically keep CF'rs in seperate "wings" to reduce transfer of bacteria when the immune system is already compromised. I have even had a *new* dr tell me I needed to wear a mask in the halls (which I basically told him to KMA on that one). A lot of time the "seperation" is more so due to the lack of understanding than anything else. For example- In the hospital, I am usually kept in an isolation room strictly so I don't get a room mate. I can leave and enter as I want to go to the kitchenette or whatnot. There is no precautionary sign on my door. People who have experience with CF will enter and leave as they would any other room. People who do not will enter fully gowned. Its quite entertaining.....
There are still programs and events for CF people. They just aren't as common. In hospitals, they typically keep CF'rs in seperate "wings" to reduce transfer of bacteria when the immune system is already compromised. I have even had a *new* dr tell me I needed to wear a mask in the halls (which I basically told him to KMA on that one). A lot of time the "seperation" is more so due to the lack of understanding than anything else. For example- In the hospital, I am usually kept in an isolation room strictly so I don't get a room mate. I can leave and enter as I want to go to the kitchenette or whatnot. There is no precautionary sign on my door. People who have experience with CF will enter and leave as they would any other room. People who do not will enter fully gowned. Its quite entertaining.....