Hi i'm a 24yr male who has sticklers syndrome, i have been diagnosed with this since i was 8, and i've recently been diagnosed with another dissorder...
Hi Is anyone having issues with babies and myopia? My son who was diagnosed with Sticklers at birth is now 19 months old. Just recently he started showing...
Hi Jacqui, Have your son's eye Dr. check for retinal detachments it is very common in Stickler kids. My son had his in 1st grade, and now has a cateract in...
Hi Jacqui My niece was 3 months when her sight was tested and she had -9 1/4 she had glasses from 4 months, she is now 7 months old, getting on fine with...
Our 1 year old just had her cleft palate repair and tubes put in her ears. Did anyone have any experience with novel and less uncomfortable methods of keeping...
Hi, My son is about to have the exact same surgery in Febuary, my husband and I are very nervous about the surgery and the post surgery. I would really like to...
Pre-surgery was nothing particularly stressful. The pre-op testing (blood test = angry baby, lots of screaming), and getting the paperwork from the ...
I have two children who were born with cleft palate and we found out much later that it was due to Sticklers. In 2000 my youngest daughter had genetic testing...
Amen sister! I am or was, until 4 kids ago, an LPN in L&D and I don't think there's enough awareness of this!!! You notice when you take your kids to the...
I have stayed on this list for quite some time but haven't interacted much. It's info I seek. We are in the process of adopting our daughter who has been...
Hi Everyone, its so good to hear from some new people, My name is Emma and I am 35 yrs old and I have Sticklers, along with my sister who is 30, her daughter...
Hi Everyone, My name is Marianne and I'm 37 yrs old with Sticklers and Pierre Robin Syndromes, I also have a 16 yr old son Mike who also have both Sticklers...
Marianne, Thanks for sharing with us. I know for me anyway that any story or information hits close to home with me. I have come to realize that no matter how...
I have two children both lovely girls both sticklers syndrome. I was just wondring if anyone knew anything about genetics and how far in the research we are...
Hi! The Genetic Dr. tested my two boys and myself for Sticklers. The test came back saying that all three of us has Sticklers. All 3 of us have the same...
Hello, everyone! My son, Shaun, was diagnosed with Stickler's Syndrome. He had cataracts, hearing problems, a cleft palate of the soft tissue, and very...
Hi Mario Nice to meet you. I am Jacqui. I have a baby that has Sticklers. He will be 2 years in June. Samuel was born with Low Frequency hearing loss and joint...
Thanks for forwarding this to me Ruben. I will get in touch with Jacqui. Mario ... Mario S. Fedele God's Gift - A touching memoir of overcoming insurmountable...
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