Hello My name Is Charlene. I am married and have 3 kids. My oldest who is now 15, Danielle), was born with a cleft palate and lip. She is doing well now. I...
Welcome Charlene.. I am Shauna.. I am 28 yrs old and I have Sticklers. I was born with no nose bridge and so therefore i have the "flat face" (trust me kids...
Hi Charlene, Iam Charlene also.My 16 yr old son has sticklers.He is most affected in his eyes.He is going for his 9th operation in a couple weeks.(retna ...
--Hello, thank you for the welcome. I guess I didn't realize that this syndrome, could affect your eyes. i guess my daughter had a mild case, just one side of...
Hi again Charlene, Yes this syndrom can affect all the conecting tissues.(heart,joints,eyes} doesnt affect everyone the same. What was the surgery your...
Hi everyone, They didn't do the genetic testing in the hospital because they "forgot" and I didn't find out until I started calling for test results. Of...
Hello, I have a 5 months old baby with PRS. I live in Europe in a country where having a genetist in the bunch of doctors seing your child is not common. When...
Dear all, I forgot a last question. Till any Stickler diagnose is addressed, do you think it is wise to visit an olphtalmologist and otorhinolaringologist? How...
Elena It is very important that you try to get the test done now. If you where to get a positive test back there are a number of this that you would need to ...
Hello Tony, Many, many thanks for your information and advice. I found the web you recommended very useful. I will insist on doing the test on my next...
Casie, How nice to hear from you. I live in Myrtle Beach, SC now. I am from Newark Ohio though. We will more than likely be going back this summer. Just...
Heather, HI nice to meet you :) Yes we are excited to get all things removed from skyler, although i have a feeling the trach wont be removed. Does your family...
Hi Casie! Well my story is long. We had no idea that any genetic disorders ran in our family. When Kayla was born she had the cleft-palate, but that is all...
WOW :) Busy family :) So did Paige have a trach? I was just curious bc of the need for nursing? SKyler has nursing as well. I hope we dont need them til he is...
Hello, I have read in the Sticklers site that astigmatism can also be a manisfestation of Sticklers although the most common problem in the eyes is myopia (+...
ramiree2004 <ramiree@...> wrote: Hello, I have read in the Sticklers site that astigmatism can also be a manisfestation of Sticklers although the most...
You're welcome. I also highly recommend going to a genetics doctor if you haven't already done so. My husband was diagnosed w/ Sticklers by a genetic doc when...
When my son was born he had a cleft palate a symptom of sticklers although my daughter who has sticklers too didn't have a cleft. Doctors wanted to put a tube...
Hi, everybody. I am so happy I found this group. After reading some of the messages, I just knew that this was a wonderful group and so supportive. My name's...
Hi Jenn, I know what ya mean about not knowing what stickler syndrom was..I didnt know til my son was 15..He had a retinal detachmet and then we found out.He ...
hi i have a 5moth old daughter who has cleft palate and she weighed 7 13 when she was born and she at 4mos ol only weighed 10lbs so she last week had to have a...
yes my daughter used it also and if it doesnt work there is also one called the pidgeon bottle niether would work for my daughter with ss and prs she still...
Christhoper was a skinny thing when he was born too; 6 lbs, 10 oz. He went down to 6 lbs 3 before we even left the hospital. He's gained a bit of weight, but...
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...
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...
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...
