princessjdc
New member
Not sure what my mutation is but next time I go, Ill ask the doc. I do know that both are the same I believe.
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mutations
- Thread starter wanderlost
- Start date
ccflewallen - I have noticed too that people seem to get a little "rowdy" when healthy Cf people talk about their good health. I guess on one level it might be a little unkind to talk about your good health to people who are not in good health, but at the same time, why not be proud? I know that many of us who are "healthy" have worked very hard to be that way. (its wanderlost, not logged in)
and I think that's understamndable, Melissa, and at least you can admit that. It's human nature to feel that way. I feel that way too when I think of all the lucky people who don't have to worry if they forgot their enzymes before they eat or don't start coughing every time they laugh - but it seems that jeaousy is really pronounced in some instances around here and I think that's too bad. As you said, you wouldn't want to be so hostile as to wish others ill, though I wonder sometimes if some people don't? (its wanderlost again - takes to long to log in with my slow dial up)
Hi,
My daughter's mutations are DF508 and 406-1 G to A. She has taken infant PFT's with FEV.5 at 94%. She has had respiratory and digestive issues early on. She is 2 1/2.
Wanderlost:
I am having a hard time putting my thoughts into words. I read the other thread where you were given some critical replies about your good health. As a mom to a CF child who has had an extremely difficult time, I did have a little bit of difficulty with your posts also. But, it was not because you are healthy, that is WONDERFUL! When you are witness (as my husband and I have been) to what CF's wrath can do, you wouldn't wish that on anyone. And we are not even close to the later stages of CF. I can honestly tell you that I fear that for Samantha with all my heart.
I think the problem I had was your "I am not one of them." comment. It left me feeling as if "well, Samantha IS one of them". If I have learned anything from participating on this board, it is that what we all share is living with CF. I know people have argued fiercely about the parent vs. patient, but we ALL suffer, not in the same way, but we ALL suffer. And this board is the place we come to where we can find people that "understand". they "get it" because they live it.
It's also important to remember that some of us also work extremely hard, and unfortunately, are still NOT healthy. (In our case, I'm speaking of my child.) It's a horrible feeling to think that others sometimes assume your child is not doing well because they aren't being given the best care. (I am not directing this at you, just in general.) CF is a beast that in it's most severe form sometimes doesn't respect anything that you do.
I wish you the best of health, and hope that you do continue posting, but please remember that those of us at the other end of the spectrum might feel as isolated as you do sometimes.
Maria (mother of three daughters, the youngest, Samantha w/cf)
My daughter's mutations are DF508 and 406-1 G to A. She has taken infant PFT's with FEV.5 at 94%. She has had respiratory and digestive issues early on. She is 2 1/2.
Wanderlost:
I am having a hard time putting my thoughts into words. I read the other thread where you were given some critical replies about your good health. As a mom to a CF child who has had an extremely difficult time, I did have a little bit of difficulty with your posts also. But, it was not because you are healthy, that is WONDERFUL! When you are witness (as my husband and I have been) to what CF's wrath can do, you wouldn't wish that on anyone. And we are not even close to the later stages of CF. I can honestly tell you that I fear that for Samantha with all my heart.
I think the problem I had was your "I am not one of them." comment. It left me feeling as if "well, Samantha IS one of them". If I have learned anything from participating on this board, it is that what we all share is living with CF. I know people have argued fiercely about the parent vs. patient, but we ALL suffer, not in the same way, but we ALL suffer. And this board is the place we come to where we can find people that "understand". they "get it" because they live it.
It's also important to remember that some of us also work extremely hard, and unfortunately, are still NOT healthy. (In our case, I'm speaking of my child.) It's a horrible feeling to think that others sometimes assume your child is not doing well because they aren't being given the best care. (I am not directing this at you, just in general.) CF is a beast that in it's most severe form sometimes doesn't respect anything that you do.
I wish you the best of health, and hope that you do continue posting, but please remember that those of us at the other end of the spectrum might feel as isolated as you do sometimes.
Maria (mother of three daughters, the youngest, Samantha w/cf)
ccflewallen
New member
Maria:
My name is Chris. I joined this forum last weekend and have enjoyed it very much. I enjoy reading and knowing how others are doing tht deal with the same issues as I do. I was born with a blockage (that elius something or other), and when I was two years old I was always in the hospital with pneumonia or something. They kept me in one of those awful tents (thats the only thing I remember about the whole experience). CF can be a "beast", but please realize how far we have come to help us live longer enjoyable lives. I will be 27 yrs old in dec. There could be some evil people who share their health to brag or make people jealous; but I think most of us CFers who are fortunate enough to be at least moderately healthy share that to encourage youngsters with CF or new parents of CFers. I hope that you will take that and try to be as positive about your little girls future as you can. If all you hear is negative, then that is what you will think.
Good Luck "Samantha";
ccflewallen
My name is Chris. I joined this forum last weekend and have enjoyed it very much. I enjoy reading and knowing how others are doing tht deal with the same issues as I do. I was born with a blockage (that elius something or other), and when I was two years old I was always in the hospital with pneumonia or something. They kept me in one of those awful tents (thats the only thing I remember about the whole experience). CF can be a "beast", but please realize how far we have come to help us live longer enjoyable lives. I will be 27 yrs old in dec. There could be some evil people who share their health to brag or make people jealous; but I think most of us CFers who are fortunate enough to be at least moderately healthy share that to encourage youngsters with CF or new parents of CFers. I hope that you will take that and try to be as positive about your little girls future as you can. If all you hear is negative, then that is what you will think.
Good Luck "Samantha";
ccflewallen
Jennifer11
New member
My daughter has L997F and D508. Here is a link for a list of mutations.
http://www.hopkinsmedicine.org/cfgenotyping/dbGU.htm
hope this will help you out
http://www.hopkinsmedicine.org/cfgenotyping/dbGU.htm
hope this will help you out
Maria,
I hope that as you read through that thread you did read my other posts, as I feel that I was aware that my comments may have been a little insensitive and commented on and clarified my points. What I said as "I am not one of them" as, I recall (honestly I have not reread it), was how I felt growing up as a healthy person with CF. I didn't say it as derogatory towards any one who is sick with CF. I am very sorry for everyone who is not well with this disease and I know, as CF runs in my family, that illness doesn't mean that the person was not cared for properly. I know that my health, though much indebted to my parents' hard work as a child, is also a gift of genetics. I KNOW that I am lucky. And I am happy about that. I didn't like going around as a kid with people rumoring that I was going to die when i was 18, as was the life expectancy when I was young. Therefore, I felt that associating myself with Cf was an association with people who were different, sickly, etc. I didn't want to be associated with those who were going to die at 18. The only people I knew with Cf were sick. I was not. I didn't want to see that side of the disease or be associated with it. I don't think that reasction was abnormal for a child.
I fully realize that I have CF. As I said in the other thread, I joined this board to finally talk to people about it. I cannot share in a lot of the heartache of this disesase as I haven't had much (kncok on wood it stays that way!) but I can educate myself and begin to admit to having something that I have mostly kept hidden for may many years. I am sorry that if my feeling this way offended anyone. I am sorry for all those who have died and will die from this disease, myself included, but I am never going to stop fighting this beast and any battle I win along they way I am going to be proud of, no matter who it makes angry or jealous. I don't mean to alientate anyone, but I don't think I should have to hide my successes.
--wanderlost
I hope that as you read through that thread you did read my other posts, as I feel that I was aware that my comments may have been a little insensitive and commented on and clarified my points. What I said as "I am not one of them" as, I recall (honestly I have not reread it), was how I felt growing up as a healthy person with CF. I didn't say it as derogatory towards any one who is sick with CF. I am very sorry for everyone who is not well with this disease and I know, as CF runs in my family, that illness doesn't mean that the person was not cared for properly. I know that my health, though much indebted to my parents' hard work as a child, is also a gift of genetics. I KNOW that I am lucky. And I am happy about that. I didn't like going around as a kid with people rumoring that I was going to die when i was 18, as was the life expectancy when I was young. Therefore, I felt that associating myself with Cf was an association with people who were different, sickly, etc. I didn't want to be associated with those who were going to die at 18. The only people I knew with Cf were sick. I was not. I didn't want to see that side of the disease or be associated with it. I don't think that reasction was abnormal for a child.
I fully realize that I have CF. As I said in the other thread, I joined this board to finally talk to people about it. I cannot share in a lot of the heartache of this disesase as I haven't had much (kncok on wood it stays that way!) but I can educate myself and begin to admit to having something that I have mostly kept hidden for may many years. I am sorry that if my feeling this way offended anyone. I am sorry for all those who have died and will die from this disease, myself included, but I am never going to stop fighting this beast and any battle I win along they way I am going to be proud of, no matter who it makes angry or jealous. I don't mean to alientate anyone, but I don't think I should have to hide my successes.
--wanderlost