Having a hard time...

Havoc

New member
Griff, I did, after some searching, find the article that was mentioned at Norma's website. One thing struck me while reading the information on her site was that they stated that people with CF "lacked chloride channels altogether" and that carriers only had "half as many chloride channels" Then I noticed the date of the article which was sometime in 1995. The Estivill research was in 1994 and the Gabriel research seems to have followed soon after. In any case that goes to show that you can't believe everything that you read on the internet. We've learned quite a lot since 1995. In 2001 or 2002 they realized that they had the movement of the Cl- ion across the membrane backward. I'm still looking for that Pubmed article, but it is difficult finding data from that long ago.

In any case the age of the CF gene was estimated based on an extrapolation of the number of mutations and the estimated rate of mutation. I'm still not saying it's wrong, but it's also far from immune to error.

I think my views are generally realistic, rather then pessimistic. But that's my opinion and in cases like this I like to stick to fact rather than opinion. We can throw around opinions until the next cholera pandemic and still get nothing resolved.

Honestly, it was not my intention to put you on the defensive. It was an interesting read and I was truly curious where that information came from.
 

Havoc

New member
Griff, I did, after some searching, find the article that was mentioned at Norma's website. One thing struck me while reading the information on her site was that they stated that people with CF "lacked chloride channels altogether" and that carriers only had "half as many chloride channels" Then I noticed the date of the article which was sometime in 1995. The Estivill research was in 1994 and the Gabriel research seems to have followed soon after. In any case that goes to show that you can't believe everything that you read on the internet. We've learned quite a lot since 1995. In 2001 or 2002 they realized that they had the movement of the Cl- ion across the membrane backward. I'm still looking for that Pubmed article, but it is difficult finding data from that long ago.

In any case the age of the CF gene was estimated based on an extrapolation of the number of mutations and the estimated rate of mutation. I'm still not saying it's wrong, but it's also far from immune to error.

I think my views are generally realistic, rather then pessimistic. But that's my opinion and in cases like this I like to stick to fact rather than opinion. We can throw around opinions until the next cholera pandemic and still get nothing resolved.

Honestly, it was not my intention to put you on the defensive. It was an interesting read and I was truly curious where that information came from.
 

Havoc

New member
Griff, I did, after some searching, find the article that was mentioned at Norma's website. One thing struck me while reading the information on her site was that they stated that people with CF "lacked chloride channels altogether" and that carriers only had "half as many chloride channels" Then I noticed the date of the article which was sometime in 1995. The Estivill research was in 1994 and the Gabriel research seems to have followed soon after. In any case that goes to show that you can't believe everything that you read on the internet. We've learned quite a lot since 1995. In 2001 or 2002 they realized that they had the movement of the Cl- ion across the membrane backward. I'm still looking for that Pubmed article, but it is difficult finding data from that long ago.

In any case the age of the CF gene was estimated based on an extrapolation of the number of mutations and the estimated rate of mutation. I'm still not saying it's wrong, but it's also far from immune to error.

I think my views are generally realistic, rather then pessimistic. But that's my opinion and in cases like this I like to stick to fact rather than opinion. We can throw around opinions until the next cholera pandemic and still get nothing resolved.

Honestly, it was not my intention to put you on the defensive. It was an interesting read and I was truly curious where that information came from.
 

Havoc

New member
Griff, I did, after some searching, find the article that was mentioned at Norma's website. One thing struck me while reading the information on her site was that they stated that people with CF "lacked chloride channels altogether" and that carriers only had "half as many chloride channels" Then I noticed the date of the article which was sometime in 1995. The Estivill research was in 1994 and the Gabriel research seems to have followed soon after. In any case that goes to show that you can't believe everything that you read on the internet. We've learned quite a lot since 1995. In 2001 or 2002 they realized that they had the movement of the Cl- ion across the membrane backward. I'm still looking for that Pubmed article, but it is difficult finding data from that long ago.

In any case the age of the CF gene was estimated based on an extrapolation of the number of mutations and the estimated rate of mutation. I'm still not saying it's wrong, but it's also far from immune to error.

I think my views are generally realistic, rather then pessimistic. But that's my opinion and in cases like this I like to stick to fact rather than opinion. We can throw around opinions until the next cholera pandemic and still get nothing resolved.

Honestly, it was not my intention to put you on the defensive. It was an interesting read and I was truly curious where that information came from.
 

Havoc

New member
Griff, I did, after some searching, find the article that was mentioned at Norma's website. One thing struck me while reading the information on her site was that they stated that people with CF "lacked chloride channels altogether" and that carriers only had "half as many chloride channels" Then I noticed the date of the article which was sometime in 1995. The Estivill research was in 1994 and the Gabriel research seems to have followed soon after. In any case that goes to show that you can't believe everything that you read on the internet. We've learned quite a lot since 1995. In 2001 or 2002 they realized that they had the movement of the Cl- ion across the membrane backward. I'm still looking for that Pubmed article, but it is difficult finding data from that long ago.
<br />
<br />In any case the age of the CF gene was estimated based on an extrapolation of the number of mutations and the estimated rate of mutation. I'm still not saying it's wrong, but it's also far from immune to error.
<br />
<br />I think my views are generally realistic, rather then pessimistic. But that's my opinion and in cases like this I like to stick to fact rather than opinion. We can throw around opinions until the next cholera pandemic and still get nothing resolved.
<br />
<br />Honestly, it was not my intention to put you on the defensive. It was an interesting read and I was truly curious where that information came from.
<br />
 

Seana30

New member
I think this is a post worth discussing!

I have never felt guilt over Courtney's CF. I did not know I was a carrier. I'm not sure what I would feel had I known I was a carrier and had a child anyways.

I can understand why you are angry at your parents. The question is, how to handle it.

I would hope Courtney would come to me if she was feeling anger torward me and her father due to the CF.

What is it you would like your parents to tell you? Is it an apology you want from them, or do you just want them to sit and listen to how you feel, and how CF affects your life?

I am sorry to hear you say your father would say just to "suck it up". I think part of being a parent is listening to your children, even when you don't want to listen.

Wish you well

Seana
 

Seana30

New member
I think this is a post worth discussing!

I have never felt guilt over Courtney's CF. I did not know I was a carrier. I'm not sure what I would feel had I known I was a carrier and had a child anyways.

I can understand why you are angry at your parents. The question is, how to handle it.

I would hope Courtney would come to me if she was feeling anger torward me and her father due to the CF.

What is it you would like your parents to tell you? Is it an apology you want from them, or do you just want them to sit and listen to how you feel, and how CF affects your life?

I am sorry to hear you say your father would say just to "suck it up". I think part of being a parent is listening to your children, even when you don't want to listen.

Wish you well

Seana
 

Seana30

New member
I think this is a post worth discussing!

I have never felt guilt over Courtney's CF. I did not know I was a carrier. I'm not sure what I would feel had I known I was a carrier and had a child anyways.

I can understand why you are angry at your parents. The question is, how to handle it.

I would hope Courtney would come to me if she was feeling anger torward me and her father due to the CF.

What is it you would like your parents to tell you? Is it an apology you want from them, or do you just want them to sit and listen to how you feel, and how CF affects your life?

I am sorry to hear you say your father would say just to "suck it up". I think part of being a parent is listening to your children, even when you don't want to listen.

Wish you well

Seana
 

Seana30

New member
I think this is a post worth discussing!

I have never felt guilt over Courtney's CF. I did not know I was a carrier. I'm not sure what I would feel had I known I was a carrier and had a child anyways.

I can understand why you are angry at your parents. The question is, how to handle it.

I would hope Courtney would come to me if she was feeling anger torward me and her father due to the CF.

What is it you would like your parents to tell you? Is it an apology you want from them, or do you just want them to sit and listen to how you feel, and how CF affects your life?

I am sorry to hear you say your father would say just to "suck it up". I think part of being a parent is listening to your children, even when you don't want to listen.

Wish you well

Seana
 

Seana30

New member
I think this is a post worth discussing!
<br />
<br />I have never felt guilt over Courtney's CF. I did not know I was a carrier. I'm not sure what I would feel had I known I was a carrier and had a child anyways.
<br />
<br />I can understand why you are angry at your parents. The question is, how to handle it.
<br />
<br />I would hope Courtney would come to me if she was feeling anger torward me and her father due to the CF.
<br />
<br />What is it you would like your parents to tell you? Is it an apology you want from them, or do you just want them to sit and listen to how you feel, and how CF affects your life?
<br />
<br />I am sorry to hear you say your father would say just to "suck it up". I think part of being a parent is listening to your children, even when you don't want to listen.
<br />
<br />Wish you well
<br />
<br />Seana
 

Kristen

New member
I wanted to know if you parents knew they were carriers before I responded, but I am impatient <img src="i/expressions/face-icon-small-wink.gif" border="0">

If you parents didn't know, I think it's very unfair for you to blame them for something they had zero control over.

If your parents DID know, I can understand feeling a little resentful that they were willing to take that risk. However, it isn't worth spending your life feeling resentful over something that you can't do anything about - what is the point in that? You were given life, and with that comes good and bad things. You need to embrace the good things, and look for the positive things that have come out of the bad/challenging things.

With that said, I TOTALLY know how you feel about unsympathetic parents. My parents do not want to hear ANYTHING about my CF. Nada. It is so freaking obvious my husband even comments on it - like a few months ago when we were visiting and I told them about some exciting new research. My dad replied "I wonder if the Patriots will make the playoffs" and my mom said "It sucks that Tom Brady is hurt." One time, when I was trying to tell my mom about something else I learned about CF, she said "will you shut up about it, you are obsessed" (I am not AT ALL). Anywho, for me, the best way to deal with this is, honestly, to not see them very much because it really does hurt. I live halfway across the country from them, so that makes it easy. I just don't talk about it because I know all it is going to do is hurt me. And I've embraced my inlaws as the caring parents I didn't have - they LOVE to hear about positive things about CF, and they send my flowers when I am sick, etc. Plus, I've got my husband, sister, and friends. So what I am saying is try to find other people to turn to if they aren't willing to change. Hopefully things will get much better for you when you move out of their home. I am sorry you are going through this.
 

Kristen

New member
I wanted to know if you parents knew they were carriers before I responded, but I am impatient <img src="i/expressions/face-icon-small-wink.gif" border="0">

If you parents didn't know, I think it's very unfair for you to blame them for something they had zero control over.

If your parents DID know, I can understand feeling a little resentful that they were willing to take that risk. However, it isn't worth spending your life feeling resentful over something that you can't do anything about - what is the point in that? You were given life, and with that comes good and bad things. You need to embrace the good things, and look for the positive things that have come out of the bad/challenging things.

With that said, I TOTALLY know how you feel about unsympathetic parents. My parents do not want to hear ANYTHING about my CF. Nada. It is so freaking obvious my husband even comments on it - like a few months ago when we were visiting and I told them about some exciting new research. My dad replied "I wonder if the Patriots will make the playoffs" and my mom said "It sucks that Tom Brady is hurt." One time, when I was trying to tell my mom about something else I learned about CF, she said "will you shut up about it, you are obsessed" (I am not AT ALL). Anywho, for me, the best way to deal with this is, honestly, to not see them very much because it really does hurt. I live halfway across the country from them, so that makes it easy. I just don't talk about it because I know all it is going to do is hurt me. And I've embraced my inlaws as the caring parents I didn't have - they LOVE to hear about positive things about CF, and they send my flowers when I am sick, etc. Plus, I've got my husband, sister, and friends. So what I am saying is try to find other people to turn to if they aren't willing to change. Hopefully things will get much better for you when you move out of their home. I am sorry you are going through this.
 

Kristen

New member
I wanted to know if you parents knew they were carriers before I responded, but I am impatient <img src="i/expressions/face-icon-small-wink.gif" border="0">

If you parents didn't know, I think it's very unfair for you to blame them for something they had zero control over.

If your parents DID know, I can understand feeling a little resentful that they were willing to take that risk. However, it isn't worth spending your life feeling resentful over something that you can't do anything about - what is the point in that? You were given life, and with that comes good and bad things. You need to embrace the good things, and look for the positive things that have come out of the bad/challenging things.

With that said, I TOTALLY know how you feel about unsympathetic parents. My parents do not want to hear ANYTHING about my CF. Nada. It is so freaking obvious my husband even comments on it - like a few months ago when we were visiting and I told them about some exciting new research. My dad replied "I wonder if the Patriots will make the playoffs" and my mom said "It sucks that Tom Brady is hurt." One time, when I was trying to tell my mom about something else I learned about CF, she said "will you shut up about it, you are obsessed" (I am not AT ALL). Anywho, for me, the best way to deal with this is, honestly, to not see them very much because it really does hurt. I live halfway across the country from them, so that makes it easy. I just don't talk about it because I know all it is going to do is hurt me. And I've embraced my inlaws as the caring parents I didn't have - they LOVE to hear about positive things about CF, and they send my flowers when I am sick, etc. Plus, I've got my husband, sister, and friends. So what I am saying is try to find other people to turn to if they aren't willing to change. Hopefully things will get much better for you when you move out of their home. I am sorry you are going through this.
 

Kristen

New member
I wanted to know if you parents knew they were carriers before I responded, but I am impatient <img src="i/expressions/face-icon-small-wink.gif" border="0">

If you parents didn't know, I think it's very unfair for you to blame them for something they had zero control over.

If your parents DID know, I can understand feeling a little resentful that they were willing to take that risk. However, it isn't worth spending your life feeling resentful over something that you can't do anything about - what is the point in that? You were given life, and with that comes good and bad things. You need to embrace the good things, and look for the positive things that have come out of the bad/challenging things.

With that said, I TOTALLY know how you feel about unsympathetic parents. My parents do not want to hear ANYTHING about my CF. Nada. It is so freaking obvious my husband even comments on it - like a few months ago when we were visiting and I told them about some exciting new research. My dad replied "I wonder if the Patriots will make the playoffs" and my mom said "It sucks that Tom Brady is hurt." One time, when I was trying to tell my mom about something else I learned about CF, she said "will you shut up about it, you are obsessed" (I am not AT ALL). Anywho, for me, the best way to deal with this is, honestly, to not see them very much because it really does hurt. I live halfway across the country from them, so that makes it easy. I just don't talk about it because I know all it is going to do is hurt me. And I've embraced my inlaws as the caring parents I didn't have - they LOVE to hear about positive things about CF, and they send my flowers when I am sick, etc. Plus, I've got my husband, sister, and friends. So what I am saying is try to find other people to turn to if they aren't willing to change. Hopefully things will get much better for you when you move out of their home. I am sorry you are going through this.
 

Kristen

New member
I wanted to know if you parents knew they were carriers before I responded, but I am impatient <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />If you parents didn't know, I think it's very unfair for you to blame them for something they had zero control over.
<br />
<br />If your parents DID know, I can understand feeling a little resentful that they were willing to take that risk. However, it isn't worth spending your life feeling resentful over something that you can't do anything about - what is the point in that? You were given life, and with that comes good and bad things. You need to embrace the good things, and look for the positive things that have come out of the bad/challenging things.
<br />
<br />With that said, I TOTALLY know how you feel about unsympathetic parents. My parents do not want to hear ANYTHING about my CF. Nada. It is so freaking obvious my husband even comments on it - like a few months ago when we were visiting and I told them about some exciting new research. My dad replied "I wonder if the Patriots will make the playoffs" and my mom said "It sucks that Tom Brady is hurt." One time, when I was trying to tell my mom about something else I learned about CF, she said "will you shut up about it, you are obsessed" (I am not AT ALL). Anywho, for me, the best way to deal with this is, honestly, to not see them very much because it really does hurt. I live halfway across the country from them, so that makes it easy. I just don't talk about it because I know all it is going to do is hurt me. And I've embraced my inlaws as the caring parents I didn't have - they LOVE to hear about positive things about CF, and they send my flowers when I am sick, etc. Plus, I've got my husband, sister, and friends. So what I am saying is try to find other people to turn to if they aren't willing to change. Hopefully things will get much better for you when you move out of their home. I am sorry you are going through this.
 

beleache

New member
Hey Jen,

I also would like to know if your parents knew that you could end up w/ c/f or not? If they didn't how could you blame them?

If they are insensitive to you about it that is another story.. That just plain sucks !!!

<img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Jen,

I also would like to know if your parents knew that you could end up w/ c/f or not? If they didn't how could you blame them?

If they are insensitive to you about it that is another story.. That just plain sucks !!!

<img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Jen,

I also would like to know if your parents knew that you could end up w/ c/f or not? If they didn't how could you blame them?

If they are insensitive to you about it that is another story.. That just plain sucks !!!

<img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Jen,

I also would like to know if your parents knew that you could end up w/ c/f or not? If they didn't how could you blame them?

If they are insensitive to you about it that is another story.. That just plain sucks !!!

<img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Hey Jen,
<br />
<br /> I also would like to know if your parents knew that you could end up w/ c/f or not? If they didn't how could you blame them?
<br />
<br /> If they are insensitive to you about it that is another story.. That just plain sucks !!!
<br />
<br /> <img src="i/expressions/heart.gif" border="0"> joni
<br />
 
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