Hi Heather

thanks for your response. Do you have a good support service in the
States? For example regular checks,gentic counselling etc

Bev


--- In sticklersyndrome@yahoogroups.com, matt russell
<mattnheatherr@...> wrote:
>
> Bev,
> Hi! My name is Heather & I live in the US. I also have SS &
have had 3 girls. I also have had numerous retinal detachments.
Two out of 3 of my daughters have SS. My oldest only has vision in
her left eye due to retinal detachments. She is 12. My pregnancies
however didn't pose any difficulties for me. We didn't know I had
SS until about 4 years ago after my oldest 2 girls were born with
cleft palates & my middle daughter also had pierre-robin syndrome.
You are correct there is a 50/50 chance of passing it on. My
youngest is the only one who doesn't have it. Like I said the
pregnancy wasn't a problem, but there were many issues after the
births with my daughters. They are still going on. Hope that helps
you.
>
>
> verity_1969 <Barichmond@...> wrote:
> Hi Amy
>
> Did you discover any further info about PGD?
>
> To be honest at the moment we seem to be favouring adoption.
>
> When I started to look into having a child of my own I initially
had
> concerns only about the baby's health and whether I would pass
down
> SS but I think further issues include the likelihood of retinal
> detachments during pregnancy - I only have vision in my right eye,
> which I value greatly. This is why I was keen to know about 'real'
> experiences of other people. I have spoken to experts but I still
> don't feel that I'm getting the full picture.
>
> Bev
>
> --- In sticklersyndrome@yahoogroups.com, Amy <amwshamws@> wrote:
> >
> > Hi Bev. My names is Amy and I am currently looking into the
> possibilities of having IVF and PGD so that I can have a child
> without SS.
> > I have discovered that it is available in the UK but at a cost.
I
> am currently debating the finances and emotional side of it all
but
> have not come to any conclusions as yet. I am only 24 at the
moment
> so I have some time.
> > I saw a programme on the other day regarding PGD though (A Child
> Against All Odds), it was very interesting, it showed the medical
> side of it as well as emotional, so you saw it through step by
step!
> >
> > Let me know how you get on though.
> >
> > Love
> >
> > Amy :o)
> >
> > ----- Original Message ----
> > From: verity_1969 <Barichmond@>
> > To: sticklersyndrome@yahoogroups.com
> > Sent: Sunday, 21 January, 2007 11:14:11 AM
> > Subject: [Stickler Syndrome ] Pregnancy - your experiences
welcome
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > Hi
> >
> >
> >
> > I am interested in hearing people's experiences re child birth.
> >
> >
> >
> > I am considering having children but have drawn the following
> >
> > conclusions: there is a 50:50 chance of passing stickler on to
my
> >
> > children; that pre natal testing to ascertain whether a baby
would
> >
> > be born with stickler is not going to happen due to lack of
> >
> > resources in the UK/complex nature of finding the faulty gene
> (which
> >
> > has a knock on effect re IVF; that a c section would have to be
te
> >
> > only option due to strain on the retina during child birth. I
have
> >
> > also recently wondered whether the carrying of a child during
> >
> > pregnancy can cause retinal problems too due to the weight and
> >
> > strain ( I read about one woman who seems to have expereineced
> this
> >
> > but don't know if it's a common problem).
> >
> >
> >
> > Has anyone any thoughts on this or can tell me of their own
> >
> > experiences (positive or negative) as I am trying to build a
> >
> > complete picture before making a choice as I have also thought
> very
> >
> > much about adoption.
> >
> >
> >
> > A bit of my background info:
> >
> > I am 37, was diagnosed with stickler at 17 (seem to be the only
> one
> >
> > in my family, but who knows?)and have had several ops on my
> retinas-
> >
> > both eyes- with the loss of all sight to one eye when aged 23,
and
> >
> > have a cataract on right eye but vision generally ok but myopic.
> >
> > More recently I am having hearing problems in left ear.
> >
> >
> >
> > Would like to hear from anyone in similar situation
> >
> >
> >
> > Bev
> >
> > Yorkshire, UK
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
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