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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...
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...
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