Welcome Amber, My name is Casie I have an almost 20 month old little boy named skyler. He too has Sticklers along with another condition called Pierre Robin...
Hi, I'm the mom of a 7 year old recently diagnosed with Stickler Syndrome. She was diagnosed at birth with Pierre Robin Sequence and has had a couple of cleft...
I e-mailed you & I added my family's pic to the photo section.~Amber ... little boy named skyler. He too has Sticklers along with another condition called...
Hello there, My name is Casie, I have an 20 month old son who also has prs and ss. At his birth we expected a cleft palate due to my family history. But that...
Where about are you from? One place that i would recommend is Shriners Hospitals and Clinics if you are having any problems with insurance.. They specialize...
Thanks Melanie. We live in K.C. and all her care so far has been at Children's Mercy Hospital. They're a great place to go, but there are so many specialties...
Lately many people have been asking where the PRS and SS came from in my family...and how we didnt know until Skyler was born (WHO KNOWS right?) But I know...
--Hi I feel for you being the Mom of a child with sticklers also.My son has had 5 surgerys since august and has more to go.All of his problems so far are in...
-Hi..Yes the cleft palate is a symptom of sticklers..My son dosent have it but he has the retna detachments and has had 5 surgerys since august..I wish you...
Both my kids have sticklers syndrome my son had the cleft palate but my daughter didn't. I was told by the genetics doctors there are 2 types of sticklers....
i have a cleft palate along with middle/inner ear problems i havent lost hearing yet except for very high tones, i also am nearsighted but not severely i found...
thats strange i have clef lip'n palate, and inner ear problems, also nearsighted. i would ask ur mom about it and confront her, cuz u could get help 4 that....
Hi I was born with cleft lip palate. I am software and web developer. I would like you to provide FREE forum, Live Chat gallery etc for Stickler Syndrome. Or...
Hi Even thought I don't have any this syndrome I am interested in this. If any member would send me more info so I can post the info on www.oncleft.com . Also...
... lost hearing yet except for very high tones, i also am nearsighted but not severely i found a paper from when i was 5 saying i could have probable PRS/i...
Both of my daughters, 17 and 19 have sticklers syndrome, so does their father and his oldest daughter. Except for my 19 year old daughter, the other 3 were...
Hi, I haven't been on lately due to trouble with Tyler and his new arthritis. I just wanted to let everyone know about the conference coming up soon in...
Hi all, Here we go again..This poor boy has been there and back since last august..this is his 6th surgey..this time is for glaucoma in the left eye...the...
I was really far into debt. Like Most I was in Financial dispair. I could not seem to get ahead no matter how hard I tried. Untill I found this place. ...
hi, there will be a sticklers syndrome conference on July 9, 10 & 11 in Illinois. Those interested should look up Sticklers Involved People, which is a website...
hi, it's been almost a month since my daughter (19) laura's eye surgery to reattach the retina and her vision in that eye has not gotten any better. her dr...
Hi Deb, I have a 12 year old son that has gone through the same eye problems as your daughter. Ty's had 2 detachments in his left eye. After the first his...
Hi My name is Em and I come from Kent, England, and I am 32. I was diagnosed as a Sticky person about 25 years ago. Have had detached retina and lost sight in...
Hello everyone I just wanted to drop a quick note on the board to let you know Mac got her prosthetic eye yesterday. It is AMAZING!!!!!! stop in if you like...
Your right, it looks amazing! I have had mine now for 18yrs now and I have never had a problem and it really was the best thing I could have done, best...
Hi Emma, different type of collagen in the skin, so no link to Sticklers. The body has 12 different types of collagen in it and Sticklers affects only Type 2....
Hi Barb, I am a member of SSSG but unfortunatly not a very active one. I will check out the gene site. Take care Em sheapc <no_reply@yahoogroups.com> wrote:...
Hi all, Just got back from NH..Son had 6th surgery on his eyes..All is well so far but he has lost almost all sight in the left due to glaucoma and the...
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