stickler syndrome

[chopper19]

is there anyone out there who has a child with stickler syndrome?? My newborn baby may have it need would like to talk to someone who know/lives someone with it

[Nowhere]

is there anyone out there who has a child with stickler syndrome?? My newborn baby may have it need would like to talk to someone who know/lives someone with it

Hey

I dont have a child with Stickler syndrome but I thought I would repply anyway to let you know you guys are n our thoughts, I know what its like waiting on a diagnosis and testing fro rare syndromes.

From what I have read about Stickler synrome its some sort of an endorine syndrome is that corect?

I hope all is well and you find out either way really soon.

HUGS

[chopper19]

Hi thanks for the info to be honest im dont know to much about it the doctors want actually tell us any more then generally suffers are deaf (which Im pretty sure m son is test next week) and they go blind if they arent born that way. I just feel so sick and hope they are wrong. To be totally honest Im too scared to even look it up on the net.

[Happy2be3]

My thoughts are with you :hugs: From what I read the degrees of severity vary greatly from person to person.. some people are barely affected at all.. lets hope thats the case for your little one if dx'd with this syndrome