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...
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Hi All, Thiis is the awesome support groups for the anxious parents like me. My son was born with a cleft palate. which is associted with Pierre Robin...
Hi I have a 9 month old with SS. He doesnt have any eye problems as of right now. He does have mild/moderate hearing loss and has been since birth. Samuel...
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Thanks for your reply MY son is 7 weeks old. He doesn't have any facial features associted with sticklers realting nose, cheeks or eyes, except for his pierre ...
Sticklers runs in my husbands family. My husband has SS. He suffers mostly from eye problems. He has lost one eye and nearly blind in the other. He's got...
This is my son Samuel who was DX with SS. Jacqui <a href="http://lilypie.com"><img src="http://by.lilypie.com/e6T6m7.png" alt="Lilypie 6th to 18th Ticker"...
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Why do I get so much spam under the Sticklers email list? I don't want to drop the list but I do get tired of spam from it. Is there something I can do to...
My name is Sara, 2 of my kids were born with Sticklers along with the cleft palates and small jaws. My son is almost 9, and my daughter is almost 5. I'm just...
Hello Sara I am 33 years old. I too was born with a cleft palate and had to have speech therapy. Mostly what they told my mom was to have me keep talking and...
I would also like to see additional info on speech. We're adopting a young lady that was diagnosed with SS at age 13. We've done extensive speech therapy but...
Hello all!!! Our daughter, Lauren, has Sticklers and she too had the sub-mucous cleft palate and Pierre Robin sysdrome. She had her first palate repair at 18...
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...
