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Reply | Forward Message #229 of 811 |

Hi everyone,

I'm 26 and living in london, I have known that I have had Stickler
syndrome since an early age. I have been fourtunate by not having a
cleft palate. In fact everyone in my family has been lucky that is
hasnt been included. We do how ever suffer with extreme myopia,
arthritis, and high frequency hearing loss.

My grandfather had the condicion first and I do believe his mother
did also. The genectic doctors have a theory as to why my family has
the disorder, they believe that is has something to do with two
blood related cousins way back in my family having a child, I am
unsure how true this theory is.

I'm expecting a baby in 4 weeks time, we are very excited, I hope
that he doesnt have the syndrome but if he does then it wouldnt
matter either way as I have had a good life so far, perhaps not as
active as I would have liked but Im happy with it all the same.

Would be good to chat to Mum's, Dad's or anyone who has sticker's as
there are not many of us about really and it would be great to make
friends with people who I will have something in common with.

Oh I have one question before I go and I hope someone can answer it
for me, how long will be it be before the hospital can tell if my
baby has the syndrome, from the time his born? I asked my gp (Home
doctor) and he couldnt give me an answer.

Thanks everyone for reading my post,

Regards

Jody






Fri Feb 4, 2005 11:36 pm

jodyhayter
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Message #229 of 811 |
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Hi everyone, I'm 26 and living in london, I have known that I have had Stickler syndrome since an early age. I have been fourtunate by not having a cleft...
jodyhayter
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Feb 4, 2005
11:36 pm

Hi Jody, its good to hear from you, I live not so far from you in Kent. As far as we can make out, my father me and my sister have sticklers. Would be really...
Emma Twyman
emmatwyman
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Feb 6, 2005
9:14 pm

Hi Emma, It's really great to hear from you, you only live down the road from me really don't you. I was told back in 1990 at Addingbrocks hospital in...
Jody Mail
jodyhayter
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Feb 7, 2005
2:55 am

Hi Tony, Thanks for the welcome, Jody :-) ... From: Tony Sizemore To: sticklersyndrome@yahoogroups.com Sent: Monday, February 07, 2005 1:29 PM Subject: RE:...
Jody Mail
jodyhayter
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Feb 9, 2005
11:13 pm

Hi Jody and welcome to group. Congratulations early on you new baby. I hope everything goes smoothly. As for you question about how long before they can give...
Tony Sizemore
mackenziesda...
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Feb 7, 2005
1:30 pm

It depends how long the testing they do for stickler's takes. ... a ... has ... as ... make ... it...
Amber
poetmash
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Feb 13, 2005
4:41 am
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