My daughter has a sub-mucous cleft pallet. Which is a really high roof with a hole in it. The hole is covered with skin. She hasn't yet had surgery (we're...
hey all i just had my last surgery on my nose i had a Cleft Lip and Pallett im 23 i just had my like 23rd surgery and im all done and very pleased with the end...
Nicole again about to go through second hip replacement and have knee problems as well as carpel tunnell and looking for other women I am 27 I would like to...
Hi, My name is Mary. My husband Isaiah and daughter Elizabeth (our only child) are affected with Stickler Syndrome (which came from my mother in-law's side of...
Hi I am Nicole Reichrath and I am 27 years old how does your hubby cope with the joint pain and has he had any replacements i've had the l hip done will do r...
Hi Nicole, Thanks for writing back. You asked about my hubby's pain. Well, from what he told me he has had arthritic joint pain since he was about 7 yrs. old....
thanks to everyone who sent me coping skills at least i'm not alone Mary Van Vliet <ismar822@...> wrote: Hi Nicole, Thanks for writing back. You asked...
Hi Mary! My name is Joni. My husband, sister-in-law, mother-in-law and youngest son have sticklers. My son also has prs. My oldest son who is 3 is unaffected....
Hello Mary, My daughter Aurora (2 1/2) has stickler and was born with prs. She has glasses since she was 10 months. Sometimes she says she has pain in her legs...
my son now 10 years old, was born cleft palate, pierre robin syndrome,and bifid uvula. cleft surgury at 13 months. he needs tubes,had a mastoidectomy r ear,...
Hello, my son has has stickler syndrome he is now 10 years old and is doing well. He has the deletion of 25 base pair in the cDNA positions 2586-2610 in the...
Hi, nice to meet you. OUrs is a mutation of the Col11A2 gene, there is no eye involvement, but the deafness, joint and short stature are more severe. I would...
I am a type III mother and parent suffering with sticklers 9 yr old boy also had retinal detachment would love to chat most of my family has sticklers Becky...
Hello! My name is Lachelle and I have a 3 yr old little boy that has a submucous cleft. He definitely has PRS, but we've never gotten a sure diagnosis of...
Whst type of surgery are they doing? We (3 of us) all have submucus clefts and no one has suggested surgery to close them. THe speech may be helped by a...
Hi! My name is Heather & 2 of my daughters & I have Stickler. My middle daughter Paige had PRS also. She had a cleft-palate repair. The recovery from the...
Hello!!! Our daughter has had two repairs done to her cleft palate. The first one was when she was 18 months old and then a pharengeal flap when she was 3....
Wow! Clayton also had a trach, but it was removed shortly after his first birthday. I was just concerned that he would be unable to eat for a while after the...
Thanks so much! So she lost interest in food after the repair? How long had she been eating? Clayton has only been eating for about 2 months, but now he...
I' m not 100% sure that they will be doing a surgery. I'm just trying to find out what kind of recoveries are typical after a cleft repair, to see if it's...
She had been in feeding therapy for about a year prior to the second surgery. In that year we had gotten up to eating yogurt, pudding, some baby foods. After...
You know I didn't even think about him losing interest in food. Paiges mickey was still in place when she had her palate repaired. I bet she wouldn't have...
Hi Michelle. My name is Heather. I found out only 3 years ago that I have Stickler Syndrome. I also am severly nearsighted & have had 10 laser surgeries for...
Hi to Michelle and Heather! My name is Joni. I do not have sticklers, but my husband, sister-in-law, mother-in-law, and youngest son do. I do have a 4 year old...
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