Re: question about genetic testing

[Guest guest]

,

I don't have hereditary CP, but I do have another hereditary

condition, Familial Adenomatous Polyposis, which is a Pre Colon

Cancer condition.

My sister had the genetic testing done for this some years back when

she had her surgery for removal of most of her colon, as did us

other 3 kids when we were younger. We didn't actually know that the

doctor had used some of her blood during surgery to do this, but

even if we had known, we would have allowed it. Unless of course my

sister was asked but forgot, which is highly likely. Anyway....

Personally, I am greatful that this has been done for us. I was able

to bring the results with me and pass on to the medical staff

necessary, and hope that one day this information might be useful in

a cure or a better treatment to eradicate it, but for now it means

that because the doctors know what to look for, we can have our

children tested for this illness just by having some blood drawn.

In my opinion, it doesn't matter how minor or major the illness, if

it is possible to detect through genetic testing whether a loved one

has it, can't hurt anyone. I do have a sister who wishes to not hear

anything about our illness, trying in her own way to deny that she

has it, but at least it is there for her children. Doing this

testing has given our children and other family members the ability

to CHOOSE for themselves if they want to use it or not.

It might be something that could solve many a problem down the road

for future needs, and as I feel to my sister, glad that she was able

to make it easier on our children to find out the initial results.

Sure not knowing can allow one to dispel it from their mind for some

time, but the thought of not knowing for sure plays havoc with my

mind, and I am certain that it leads to a high percentage of the

stress I suffer with in my daily life. Unfortunately, I can't bring

myself to get my little girl tested yet. They can't do anything for

it until she is around 12-18 anyway. It would either alleviate my

mind, or lay a huge load of guilt on me (which I am already

feeling), but I still feel no need to put her through a needle stick

just to put my mind at rest for now. Especially when she has had to

be with me everytime I've had my port flushed, or blood drawn from

my arm if they can do that...it is her fear (she is 3) that just

going to the doctor for her wellness check, she will need to have

the " red taken out " .

Your reason of thinking might be completely different, and that is

okay. I guess one needs to measure up the pros & cons if there are

any.

[Guest guest]

>

> Hello All,

> I have a question that I need some opinions answering. Both my

> sister and I suffer from chronic pancreatitis. I have been reading

> about the genetic testing done to determine to see if it is

> hereditary, my doc already assumes it is. Should I have the

testing

> done to confirm this? I am worried if I do and it is that I will

> stress out worrying if I have passed this disease on to my

> daughters. That then opens up a new can of worms, should I have my

> daughters tested if it is hereditary CP? I don't want to screw

them

> out of future life or medical ins. but it would be nice to tell

them

> if they carry these genes as they get older so they will be able to

> make the right choices to prevent or prolong having symptoms.

> UUUUGGGHHH!!! I really don't know what I should do and any advice

> will greatly be appreciated.

>

>

> Mommy to Hannah and Hayle

> Angel boys Wayde and Bryce

In order for you to have inherited it both of your parents would

have to have had copies of the defective genes. They would be

carriers. If you and your spouse both have copies of the defectives

genes than it can be passed on to your children. If you pass it on

to your children, than there is a 1 in 4 chance they will get the

illness. The upside is there is only 25 percent of the time it is

passed on.