RE: Dennis and cf

[Guest guest]

Dennis, My daughter also has chronic pancreatitis and tested positive

for the cf gene. She was told she got it either thru her Dad or

myself. This seems to have made her condition worse. They tell you

that you have it but have no answers as to what to do about it.

Anyway this has been the case for her. So she sits and

wonders,,,what is next, what do I do, where do I go, what is going to

happen next? It is a never ending battle, there seem to be no

answers.

Until she tested positive for the cf gene, none of us were aware of

it, it had never been discovered before. And let me tell you this,

as a parent, it makes you feel extrememly guilty to think that you

gave your child something that will bring them nothing but pain.

In her case, she continues to worsen as time goes on and it has been

over 5 years now.

Is there an answer, is there hope, I dont know, I can only pray that

sone day she finds an answer.

Im sure this has not helped you, but wanted to reply to you...

Jean ,,,mother of

[Guest guest]

If they haven't told you already, you need to have a sweat chloride

test to see if she has cf. You can have the gene and not have cf

but it is important to know. And you should not feel guilty at any

level. If she has the delta F508 mutation, or any for that matter,

it would take both of you to pass it to her. In other words, you

both would be carriers. If she tests positive for cf, at least you

will know what your dealing with early. It takes part of the

guessing out of the game. I am very interested in what made you

decide to have a dna test? If you let me know where you are on

everything, maybe I can give you some information that I found in my

research travels. I just started a home trial of gsh. I am not

sure if it will help me yet but I am excited to see the results.

Anyway, if you would like to team up maybe we could compare notes.

dennis

> Dennis, My daughter also has chronic pancreatitis and tested

positive

> for the cf gene. She was told she got it either thru her Dad or

> myself. This seems to have made her condition worse. They tell

you

> that you have it but have no answers as to what to do about it.

> Anyway this has been the case for her. So she sits and

> wonders,,,what is next, what do I do, where do I go, what is going

to

> happen next? It is a never ending battle, there seem to be no

> answers.

> Until she tested positive for the cf gene, none of us were aware

of

> it, it had never been discovered before. And let me tell you

this,

> as a parent, it makes you feel extrememly guilty to think that you

> gave your child something that will bring them nothing but pain.

> In her case, she continues to worsen as time goes on and it has

been

> over 5 years now.

> Is there an answer, is there hope, I dont know, I can only pray

that

> sone day she finds an answer.

> Im sure this has not helped you, but wanted to reply to you...

> Jean ,,,mother of