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Pregnancy - your experiences welcome   Message List  
Reply | Forward Message #488 of 810 |
Re: [Stickler Syndrome ] Pregnancy - your experiences welcome

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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Sun Mar 4, 2007 5:43 pm

amwshamws
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Forward
Message #488 of 810 |
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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...
verity_1969
Offline Send Email
Jan 21, 2007
11:15 am

Hello Bev. My name is Cathy. I am 33 with no children. I was born with a cleft palate and had ear tubes and a detached retna at age 11 in my left eye. So far...
Cathy
catangel7
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Jan 21, 2007
6:24 pm

I have my own personal story. I do not have Sticklers but my husband does. When I was pregnant, I didnt know what I was in for. I told my doctor that there...
Jacqui
momofbksa2001
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Jan 22, 2007
5:15 pm

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...
Amy
amwshamws
Offline Send Email
Mar 4, 2007
5:44 pm

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...
verity_1969
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Jun 24, 2007
12:55 pm

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...
matt russell
mattnheatherr
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Jun 26, 2007
1:38 am

Hi Heather thanks for your response. Do you have a good support service in the States? For example regular checks,gentic counselling etc Bev ... have had 3...
verity_1969
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Jun 26, 2007
11:29 am

Bev, Sorry it took so long to respond. One daughter has had a never ending ear infection. Yeah we have very good support here in the states. They did many...
matt russell
mattnheatherr
Offline Send Email
Jul 10, 2007
3:52 am
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