What is Double DF508?

[dyza]

The DF508 tends to cause pancreatic insufficencies, our son's Dr said to us that the DF508 is a 'trigger gene'. Incidently our son's pancreas works fine, his other gene, RH117, is a class 4 mutation.
I have double RH117, but have no symptoms whatsoever and so my Dr has not DX me as having CF. Who else has a double gene, other than DF508, I know there are some here.

 

[dyza]

The DF508 tends to cause pancreatic insufficencies, our son's Dr said to us that the DF508 is a 'trigger gene'. Incidently our son's pancreas works fine, his other gene, RH117, is a class 4 mutation.
I have double RH117, but have no symptoms whatsoever and so my Dr has not DX me as having CF. Who else has a double gene, other than DF508, I know there are some here.

 

[westonsmom]

I was also told that the delta 508 wasn't the worst but not the best either. I have done a little reading on it, and came up with most kids with delta 508 present with meconium illeus at birth (my son) and have more digestive problems (my son). It also noted that while more digestive problems were apparent in the beginning lung function started to decline when the child reached early teen years...From what I have heard on this forum it doesn't seem to be true for everyone. I think it really does depend on the way it manifests in each person's body.
My son has had a hell of a time so far, but is almost 50% for weight and generally healthy with little lung problems.

Jenn
mom of Ella and Weston

 

[westonsmom]

I was also told that the delta 508 wasn't the worst but not the best either. I have done a little reading on it, and came up with most kids with delta 508 present with meconium illeus at birth (my son) and have more digestive problems (my son). It also noted that while more digestive problems were apparent in the beginning lung function started to decline when the child reached early teen years...From what I have heard on this forum it doesn't seem to be true for everyone. I think it really does depend on the way it manifests in each person's body.
My son has had a hell of a time so far, but is almost 50% for weight and generally healthy with little lung problems.

Jenn
mom of Ella and Weston

 

[westonsmom]

I was also told that the delta 508 wasn't the worst but not the best either. I have done a little reading on it, and came up with most kids with delta 508 present with meconium illeus at birth (my son) and have more digestive problems (my son). It also noted that while more digestive problems were apparent in the beginning lung function started to decline when the child reached early teen years...From what I have heard on this forum it doesn't seem to be true for everyone. I think it really does depend on the way it manifests in each person's body.
My son has had a hell of a time so far, but is almost 50% for weight and generally healthy with little lung problems.

Jenn
mom of Ella and Weston

 

[Ratatosk]

When DS was diagnosed at birth, I came across an article -- one reference and I wish I'd have saved a copy -- that said, almost in an off handed way that homozygous delta f508 was the most severe form. Author didn't elaborate... All I can think is that maybe the reference was that a large majority have that combination? Or a large majority have bowel obstructions caused by meconium illeus and usually require surgery and a stay in the nicu? Who knows?

I guess if it was that severe of a gene mutation or of such great concern, there'd be more documentation. Funny how that one little statement just sticks in ones head and scares the HECK out of me every time I hear a little cough or things appear a little off with DS.

 

[Ratatosk]

When DS was diagnosed at birth, I came across an article -- one reference and I wish I'd have saved a copy -- that said, almost in an off handed way that homozygous delta f508 was the most severe form. Author didn't elaborate... All I can think is that maybe the reference was that a large majority have that combination? Or a large majority have bowel obstructions caused by meconium illeus and usually require surgery and a stay in the nicu? Who knows?

I guess if it was that severe of a gene mutation or of such great concern, there'd be more documentation. Funny how that one little statement just sticks in ones head and scares the HECK out of me every time I hear a little cough or things appear a little off with DS.

 

[Ratatosk]

When DS was diagnosed at birth, I came across an article -- one reference and I wish I'd have saved a copy -- that said, almost in an off handed way that homozygous delta f508 was the most severe form. Author didn't elaborate... All I can think is that maybe the reference was that a large majority have that combination? Or a large majority have bowel obstructions caused by meconium illeus and usually require surgery and a stay in the nicu? Who knows?

I guess if it was that severe of a gene mutation or of such great concern, there'd be more documentation. Funny how that one little statement just sticks in ones head and scares the HECK out of me every time I hear a little cough or things appear a little off with DS.

 

[ashton2005]

Ashton Has double delta f508 and had an MI and in pancreatic insufficient also he has been sick quite a bit and his PFT's show some obstruction still so it all varies

 

[ashton2005]

Ashton Has double delta f508 and had an MI and in pancreatic insufficient also he has been sick quite a bit and his PFT's show some obstruction still so it all varies

 

[ashton2005]

Ashton Has double delta f508 and had an MI and in pancreatic insufficient also he has been sick quite a bit and his PFT's show some obstruction still so it all varies

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lflatford</b></i>

could someone please tell me where they have found that the double delta f508is the worst to have. I have followed this board for two years and people constantly say delta f 508is the worst to have. Sure it is the most common because of the likelyhood of genes; but also alot of the treatments are b/c of delta f508. My little girl has the double and she is for the most part pretty healthy; she has digestive issues; but also a few of the older patients with double delta have digestive issues as well and very little lung issues. CF cannot be determined by the genes you have; each case is different no matter if you have double delta f508 or something else. But to say that this the worst to have is a common misconception.</end quote></div>


CF isn't that simple. So much goes into how CF genes are expressed, such as modifier genes.

Also, lifestyle and environment can affect how CF genes are expressed.

New literature also claims that exercise can alter how the genes are expressed.

So "bad" or "better" CF genes simply don't exist. It's an oversimplification of a complex disease state.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lflatford</b></i>

could someone please tell me where they have found that the double delta f508is the worst to have. I have followed this board for two years and people constantly say delta f 508is the worst to have. Sure it is the most common because of the likelyhood of genes; but also alot of the treatments are b/c of delta f508. My little girl has the double and she is for the most part pretty healthy; she has digestive issues; but also a few of the older patients with double delta have digestive issues as well and very little lung issues. CF cannot be determined by the genes you have; each case is different no matter if you have double delta f508 or something else. But to say that this the worst to have is a common misconception.</end quote></div>


CF isn't that simple. So much goes into how CF genes are expressed, such as modifier genes.

Also, lifestyle and environment can affect how CF genes are expressed.

New literature also claims that exercise can alter how the genes are expressed.

So "bad" or "better" CF genes simply don't exist. It's an oversimplification of a complex disease state.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lflatford</b></i>

could someone please tell me where they have found that the double delta f508is the worst to have. I have followed this board for two years and people constantly say delta f 508is the worst to have. Sure it is the most common because of the likelyhood of genes; but also alot of the treatments are b/c of delta f508. My little girl has the double and she is for the most part pretty healthy; she has digestive issues; but also a few of the older patients with double delta have digestive issues as well and very little lung issues. CF cannot be determined by the genes you have; each case is different no matter if you have double delta f508 or something else. But to say that this the worst to have is a common misconception.</end quote></div>


CF isn't that simple. So much goes into how CF genes are expressed, such as modifier genes.

Also, lifestyle and environment can affect how CF genes are expressed.

New literature also claims that exercise can alter how the genes are expressed.

So "bad" or "better" CF genes simply don't exist. It's an oversimplification of a complex disease state.

 

[Augustmom0003]

When Ethan's nurse called to tell me what genes he had (Double Delta F508) she said..."You will hear this is the most severe...but that's not true...it is the most common gene, so there are so many varying severities" and basically, that you can't predict the severity of CF. I'm not saying she's right...but it makes sense.

 

[Augustmom0003]

When Ethan's nurse called to tell me what genes he had (Double Delta F508) she said..."You will hear this is the most severe...but that's not true...it is the most common gene, so there are so many varying severities" and basically, that you can't predict the severity of CF. I'm not saying she's right...but it makes sense.

 

[Augustmom0003]

When Ethan's nurse called to tell me what genes he had (Double Delta F508) she said..."You will hear this is the most severe...but that's not true...it is the most common gene, so there are so many varying severities" and basically, that you can't predict the severity of CF. I'm not saying she's right...but it makes sense.

 

[welshgirl]

remember if they ever find a cure it will most likely be for this one as it's the most common. for that reason alone i'm glad joe has this particular mutation .

 

[welshgirl]

remember if they ever find a cure it will most likely be for this one as it's the most common. for that reason alone i'm glad joe has this particular mutation .

 

[welshgirl]

remember if they ever find a cure it will most likely be for this one as it's the most common. for that reason alone i'm glad joe has this particular mutation .