most of my family has been dx'd w/ SS, but no one has been dx'd w/ Albinism then again, most of that side of my family is part black... ... [Non-text portions...
hello. I have a little boy who will be four in august. Last year he was dx with Occular Albinism. We havent seen our eye spec in a few months, so I dont know...
hello. my brother had his cleft repaired when he was 2 i believe, but he is now 7 and having to undergo further surgery. just out of curiosity...did they...
There are several forms of albinism. Ouuclar usually affects only boys. My daughter has the type where she still has mild colouring (her eyes are grey, her...
Hi, I have a 14 year old son with SEMD/SS/PRS. Does anyone here have bad joint contractures and osteoarthritis? Also is anyone going to the conference in...
Hi, we have Stickler Syndrome (my daughter and I have PRS my son doesnt) and SED. Put together we have OSMED. I have issues with osteoarthis in my back, neck...
Yes, we are going to the conference. We are looking forward to it again. We attended last year and it was so neat to meet other families with SS. Our 5 year...
... share my advice and stories but due to carpal tunnell it would be easier to get calls (352)428-0693 or (618)549-9583 angeleyes2362901@... ... daugter ... ...
... old, who has Stickler syndrome and Pierre Robin sequence. Would be happy to chat to you about anything, Kaitlyn had to spend the first 3 years of her life...
hi amy well i have two boys with this sydrome both who had pierre robin and tube feeding my older son also had perthes legg disease.. to date at age 10 and 3...
Hi My name is Jacqui. I have a 2 month old that 90% sure has Sticklers. my husband, his brothers and sisters and father all have Sticklers. So most likely my...
This four step guide will give you the foundation you always wanted. Learning the basics in handling stocks. This guide will help anyone, interested in getting...
Hi everyone, I'm a 35 yr old mum of a 15 yr old with PRS/SS and I also have PRS/SS. I'm the past 12 mths I've had both hips and both knees replaced due to...
Hi, Can someone please explain further on the joint problems. My husband is having a difficult time with his back. I take him for an Xray tomorrow. He can...
Hi there, I know how you feel, i to am here in Australia, and it feels as though we are the only ones, can be difficult at times. I have a 4 year old daughter,...
I am a 35 yr old mom of 2 (1 son, who is 4 and a brand new daughter that is 1 month old). I was diagnosed with sticklers while pregnant with my daughter. She ...
Hi Jennifer, I have a little girl also with PRS and sticklers, Kait has been tube fed her entire life to date, she is nearly 5 years old. We have probably had...
Hello!!! Our daughter also has a g-tube. She has had one her whole life. She was born with a bi-lat cleft and PRS. She has always had the mic-key button...
This four step guide will give you the foundation you always wanted. Learning the basics in handling stocks. This guide will help anyone, interested in getting...
I want to thank everyone that posted and replied. It's so nice to know that I am the only one that has a child with a mic-key. Now, for my question..... How...
Hi Jennifer, There should be a bolus feeding tube that comes with the mic key set, i generally vent Kait first, by attaching the tube along with a 60cc tube...
Hi I have a 5 month old little boy who has been dignosed with stickler syndrome. I have been told that it runs in his fathers side of the family but I have...
... Hi Carole I am Amy, the best thing I would suggest is just use some good search engines and put Stickler syndrome in and you should have lots of sites come...
Hi everyone. I am Amy and new to the group. I was wondering if anyone out there who had been diagnosed with SS before having children had discussed the...
Hi How good is it to have someone to chat to in the UK about SS as most people I have found are from Aus or USA and their way of treating people id so...
I have a 4 month old with SS also. He got it from his fathers side as well. His eyes seem good at the moment but he has low frequency hearing loss. He also...
My name is Sarah and my son Ryan has PRS and Stickler. He is now five years old. Ryan has had the mandibular distraction (at 3 weeks old) that brought his...
... weeks ... trickiest ... may ... had ... there ... hi sarah, my daughter, now 19 was born with a cleft palate, PRS,and stickler syndrome.My other daughter,...
Hi Sarah! I to live in Indiana. I sure don't know of any support groups around here. I have 2 daughters with Stickler. I also have it as well. My oldest...
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