Delta 508 Severity?

K

kitomd21

New member
I know that each CF individual is affected differently, however, does anyone know if there is any way to predict CF severity? I know that df508 is the most common mutation but is it "better" to have two different mutations? I've seen posts from CF individuals in their 40s and 50s and am curious which mutations they have?

Thanks!
 
K

kitomd21

New member
I know that each CF individual is affected differently, however, does anyone know if there is any way to predict CF severity? I know that df508 is the most common mutation but is it "better" to have two different mutations? I've seen posts from CF individuals in their 40s and 50s and am curious which mutations they have?

Thanks!
 
K

kitomd21

New member
I know that each CF individual is affected differently, however, does anyone know if there is any way to predict CF severity? I know that df508 is the most common mutation but is it "better" to have two different mutations? I've seen posts from CF individuals in their 40s and 50s and am curious which mutations they have?

Thanks!
 
K

kitomd21

New member
I know that each CF individual is affected differently, however, does anyone know if there is any way to predict CF severity? I know that df508 is the most common mutation but is it "better" to have two different mutations? I've seen posts from CF individuals in their 40s and 50s and am curious which mutations they have?

Thanks!
 
K

kitomd21

New member
I know that each CF individual is affected differently, however, does anyone know if there is any way to predict CF severity? I know that df508 is the most common mutation but is it "better" to have two different mutations? I've seen posts from CF individuals in their 40s and 50s and am curious which mutations they have?
<br />
<br />Thanks!
 
N

NoExcuses

New member
no way to predict. so many CFers with the exact same CF mutations have varying severity.

for any "rule of thumb" anyone can give you, i can give you many exceptions to that rule.

i'd be more concerned about the CF center that you attend, how proactive the doctors are, and how compliant you are with medication therapy.

this is coming from someone who has dealt with the disease for 27 years. all the best to you.
 
N

NoExcuses

New member
no way to predict. so many CFers with the exact same CF mutations have varying severity.

for any "rule of thumb" anyone can give you, i can give you many exceptions to that rule.

i'd be more concerned about the CF center that you attend, how proactive the doctors are, and how compliant you are with medication therapy.

this is coming from someone who has dealt with the disease for 27 years. all the best to you.
 
N

NoExcuses

New member
no way to predict. so many CFers with the exact same CF mutations have varying severity.

for any "rule of thumb" anyone can give you, i can give you many exceptions to that rule.

i'd be more concerned about the CF center that you attend, how proactive the doctors are, and how compliant you are with medication therapy.

this is coming from someone who has dealt with the disease for 27 years. all the best to you.
 
N

NoExcuses

New member
no way to predict. so many CFers with the exact same CF mutations have varying severity.

for any "rule of thumb" anyone can give you, i can give you many exceptions to that rule.

i'd be more concerned about the CF center that you attend, how proactive the doctors are, and how compliant you are with medication therapy.

this is coming from someone who has dealt with the disease for 27 years. all the best to you.
 
N

NoExcuses

New member
no way to predict. so many CFers with the exact same CF mutations have varying severity.
<br />
<br />for any "rule of thumb" anyone can give you, i can give you many exceptions to that rule.
<br />
<br />i'd be more concerned about the CF center that you attend, how proactive the doctors are, and how compliant you are with medication therapy.
<br />
<br />this is coming from someone who has dealt with the disease for 27 years. all the best to you.
 
K

ktsmom

New member
I see from your signature that you and your daughter are fairly new on this journey. I know from my own personal experience that in the beginning <b>I just wanted to know</b>, one way or the other, what the future held in terms of the disease progression.

I'm sad that the joy you should be experiencing with your new baby is overshadowed by questions like these, but I completely understand. As was mentioned, CF care can make a difference and so does the overall health of the individual, modifier genes, etc.

There is a gal on the boards who is DDF508 is in her 30's, and is a mom. That is one example. I hope it gives you some comfort, and a little hope that perhaps you were looking for. Hugs!
 
K

ktsmom

New member
I see from your signature that you and your daughter are fairly new on this journey. I know from my own personal experience that in the beginning <b>I just wanted to know</b>, one way or the other, what the future held in terms of the disease progression.

I'm sad that the joy you should be experiencing with your new baby is overshadowed by questions like these, but I completely understand. As was mentioned, CF care can make a difference and so does the overall health of the individual, modifier genes, etc.

There is a gal on the boards who is DDF508 is in her 30's, and is a mom. That is one example. I hope it gives you some comfort, and a little hope that perhaps you were looking for. Hugs!
 
K

ktsmom

New member
I see from your signature that you and your daughter are fairly new on this journey. I know from my own personal experience that in the beginning <b>I just wanted to know</b>, one way or the other, what the future held in terms of the disease progression.

I'm sad that the joy you should be experiencing with your new baby is overshadowed by questions like these, but I completely understand. As was mentioned, CF care can make a difference and so does the overall health of the individual, modifier genes, etc.

There is a gal on the boards who is DDF508 is in her 30's, and is a mom. That is one example. I hope it gives you some comfort, and a little hope that perhaps you were looking for. Hugs!
 
K

ktsmom

New member
I see from your signature that you and your daughter are fairly new on this journey. I know from my own personal experience that in the beginning <b>I just wanted to know</b>, one way or the other, what the future held in terms of the disease progression.

I'm sad that the joy you should be experiencing with your new baby is overshadowed by questions like these, but I completely understand. As was mentioned, CF care can make a difference and so does the overall health of the individual, modifier genes, etc.

There is a gal on the boards who is DDF508 is in her 30's, and is a mom. That is one example. I hope it gives you some comfort, and a little hope that perhaps you were looking for. Hugs!
 
K

ktsmom

New member
I see from your signature that you and your daughter are fairly new on this journey. I know from my own personal experience that in the beginning <b>I just wanted to know</b>, one way or the other, what the future held in terms of the disease progression.
<br />
<br />I'm sad that the joy you should be experiencing with your new baby is overshadowed by questions like these, but I completely understand. As was mentioned, CF care can make a difference and so does the overall health of the individual, modifier genes, etc.
<br />
<br />There is a gal on the boards who is DDF508 is in her 30's, and is a mom. That is one example. I hope it gives you some comfort, and a little hope that perhaps you were looking for. Hugs!
 
K

kaylasdad

New member
Our dd is ddf508. And I went through the same thing you are, I wanted someone to tell me that she was going to be fine and live a long healthy life. The truth of the matter is no one can tell you that.But I do know this with early dx and the way it sounds, she has a great mom that really cares about her health,It sure sounds like Ellie is in really good hands. And just so you know there are alot of people that are ddf508 that are in there 40's and think of it this way they didn't have treatments or drugs back then like they do now. There are alot of new drugs coming through the pipeline that show great promise in the fight against cf.Like NoExcuses said i'd be more concerned about the cf center you go to.
 
K

kaylasdad

New member
Our dd is ddf508. And I went through the same thing you are, I wanted someone to tell me that she was going to be fine and live a long healthy life. The truth of the matter is no one can tell you that.But I do know this with early dx and the way it sounds, she has a great mom that really cares about her health,It sure sounds like Ellie is in really good hands. And just so you know there are alot of people that are ddf508 that are in there 40's and think of it this way they didn't have treatments or drugs back then like they do now. There are alot of new drugs coming through the pipeline that show great promise in the fight against cf.Like NoExcuses said i'd be more concerned about the cf center you go to.
 
K

kaylasdad

New member
Our dd is ddf508. And I went through the same thing you are, I wanted someone to tell me that she was going to be fine and live a long healthy life. The truth of the matter is no one can tell you that.But I do know this with early dx and the way it sounds, she has a great mom that really cares about her health,It sure sounds like Ellie is in really good hands. And just so you know there are alot of people that are ddf508 that are in there 40's and think of it this way they didn't have treatments or drugs back then like they do now. There are alot of new drugs coming through the pipeline that show great promise in the fight against cf.Like NoExcuses said i'd be more concerned about the cf center you go to.
 
K

kaylasdad

New member
Our dd is ddf508. And I went through the same thing you are, I wanted someone to tell me that she was going to be fine and live a long healthy life. The truth of the matter is no one can tell you that.But I do know this with early dx and the way it sounds, she has a great mom that really cares about her health,It sure sounds like Ellie is in really good hands. And just so you know there are alot of people that are ddf508 that are in there 40's and think of it this way they didn't have treatments or drugs back then like they do now. There are alot of new drugs coming through the pipeline that show great promise in the fight against cf.Like NoExcuses said i'd be more concerned about the cf center you go to.
 
K

kaylasdad

New member
Our dd is ddf508. And I went through the same thing you are, I wanted someone to tell me that she was going to be fine and live a long healthy life. The truth of the matter is no one can tell you that.But I do know this with early dx and the way it sounds, she has a great mom that really cares about her health,It sure sounds like Ellie is in really good hands. And just so you know there are alot of people that are ddf508 that are in there 40's and think of it this way they didn't have treatments or drugs back then like they do now. There are alot of new drugs coming through the pipeline that show great promise in the fight against cf.Like NoExcuses said i'd be more concerned about the cf center you go to.
 
You must log in or register to reply here.
Top