hey all,

Thanks for the messages...


Joni ...
I appreciate the odds game and if I had that driving need to be a mother to
my own genetic child, I may have decided to play the game ... but, because I
know about it **before** i got pregnant and I can't help but see all those
children looking for a home, we have decided to not have our own biological
children. The other thing I fear is that I may have a "mild" case... my
children may not .... and in addition, I am significantly older ... 36, I
also have an increased risk of other problems ...

Amber ...
Exactly, I am working through the implications of what it means to have the
syndrome as an adult. No one else in my family has been tested ( I suspect
my Dad's side) but I may also be a "fresh mutation"

Casie ...
Yes I have PRS ... for most of the time growing up, that was the only thing
my parents and I knew about. And that was only because my dad stole the
doctor's chart at my birth. So far as I know right now, PRS by itself is not
hereditary. But the problem is that PRS is rarely by itself.
You may not have the problems... many of my "problems" were experienced as
"clumsy" "uncordinated" etc. by my parents, sympathy and a little puzzlement
and some of the pains I experienced ... but every thing was treated as
though it was a "normal" issue. We dealt with the issues as they arose and
did not "connect" the dots. There are two issues so far that I wish we had
known about and dealt with as I grew.

1) the retineal issues... if I had known about the increased risk, I would
have screamed blue murder at the first sign of vision changes, not gotten
shunted around for 5 days. (That is a whole other story that ended in a
medical malpractice suit)

2) Foot issues ... I did have a pair of orthotics when I was in high school
... they made the situation worse, If I had had a set of xrays done and seen
a specialist, I may have gotten the correct orthotics and save myself a lot
of pain and issues.

Other than that... don't "wait" for the problems, they may not come. Just
remember the Stickler's context whenever you end up dealing with the little
things that life throws you.


Corinne

On 11/9/05, mikeandcasie@... <mikeandcasie@...> wrote:
>
> Corine :)
>
> hello! I am Casie, 24, almost 25 mom to a 3 year old. I was diagnosed at
> 21
> with sticklers and my son was diagnosed at birth with stickelrs and PRS,
> pierre robin.
>
> Do you have PRS?? you mentioned you were looking into it being passed
> on...what did you find out, and diid you guys decide to have a baby??
>
> I would love to answer any ?'s you may have ... tho i havent had some of
> the
> problems you have... i am still waiting for them :) i guess being prepared
>
> is a good thing..tho its scary!
>
> hope you are well.
> Casie mom to skyler
>
>
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--
Corinne Claypool
GlassOrchidCreations.com


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