Hi there..I'm new and have a 14 year old son with Stickler's and he's had it since birth, of coure, but now it's taking its toll, and has been since he was 10....
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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...
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...
Hi everyone. Just wanted to introduce myself. My name in Victoria and I have a 6 month old son who was born with Sticklers Syndrome. We have been through many...
Hi Victoria and I have been a new member to the group for about 3 months now but our son has Stickler's and I"m on Myspace if you are, too. My page is ...
Hi Victoria My name is Jacqui. I have a baby that just turned the BIG 1 yr a few days ago. Samuel was born with SS. His father has it as well as many members...
I just got the call yesterday that Aubrey's tests came back positive for ss. Aubrey is almost 5. She was born with a soft cleft palate. She is extremely...
I know what you mean!! I mean, about the doctor's not knowing what it is. I told our pediatrician that Brennon had it (when he was 10) and he had to get out...
whats terrible is when you as parents has to educate the doctor on SS. I have been to doctors where I mentioned it and I had to go into detail what the...
Hi! I have a son that was born with PRS and the Genetic Dr. took my son's blood, my blood, my husband's blood, and my other son's blood, for the Sticklers Test...
Hey all, I also have a 5 months old son, born with cleft palate and Pierre robin sequence, We are going to the genetics for the 2nd time for the sticklers...
Heck yes, or just walk around to Doctor's offices..LOL!!!!!!! Brennon was on the news with it and most people still hadn't heard of it..LOL! We have to educate...
Hey, We went to the genetics yesterday and he took my son's blood for the sticklers test. I was wondering, could you please tell me how long did it take for...
Hi Jacqui It was great to hear from you, I also am glad that you have a young baby it helps to know that we can share experiences. The joint popping is awful,...
Hi Victoria, If you don't mind can I ask did your son's stickler daignosis based on clinical findings or did you guys had a blood test done on him? I have a 5...
Hello all !!! My name is Ann-Marie and my 6 year old daughter, Lauren, has Sticklers. Lauren (who we adopted when she was 18 months old) has PRS, high...
Sara, This is Victoria. Just wanted to let you know I sent you an email off the boards- it might go to your junk email so just wanted to tell you I sent it. ...
Ann-Marie, I would LOVE it if you could send me the info you have. mommajnine @ gmail.com We are very new at SS. We haven't even had our follow up appointment...
Sara, Aubrey's test results took around 4 weeks to receive the results. My husband and I are going in this coming week to have our blood tested. We live about ...
Thanks Janine for your reply. your kids are adorable specially Aubrey. I love her blue eyes -:) Well Myopia means nearsightness and PRS means Pierre robin...
Ann-Marie It would be awesome , if you could share this info with all of us, as sticklers seems to be such a rare condition, even my son's pediatrician had to...
Ann-Marie It would be awesome , if you could share this info with all of us, as sticklers seems to be such a rare condition, even my son's pediatrician had to...
Hello all!! I will definately share this. It was such a blessing to receive it when I did. I will have my husband help me with scanning it and sending it...
Hello!! We are in Brooklyn Park, just outside the Twin Cities. am Janine <mommajnine@...> wrote: Ann-Marie, I would LOVE it if you could send me the...
We live in northern minnesota, small town called Thief River Falls. I would love to learn more about this Sticklers conference also, if you don't mind. Sara,...
Hey, and isn't Minnesota where they're having the annual Stickler's Involved People conference this year? Go to http://www.sticklers.org. and there's all kinds...
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