A Stickler syndrome story
Mar 3, 2016
New to this site and find it great that I can connect with other sufferers. I'm Kim, I'm 23 almost 24 years old. I suffered my first retinal detachment in April 2014 and have since had 7 operations on my eyes - 5 to the left eye which had the detachment and 2 to my right eye following some retinal tears. I am now in a stable condition, although my left we is detached again I will no longer be having any operations for my own sanity! I am currently going through the official diagnosis procedure I am treated at moorfields in London and they are currently going through testing my genes.
My brother is a diagnosed sticklers sufferer also, he is completely blind and suffers with his joints. He has suffered since he was 8 years old and is now 28. That's a little bit about me, I'd love to get chatting to other sufferers!
Hey Kim, I was googling something about sticklers and see your story. That's sad about your brother sounds like you've both had a pretty hard time of it. I thought I'd comment since no one else has. I'm 32 I had my first bilateral retinal detachment when i was 8 and then again when i was 10 luckily my vision corrects quite well so i live a normal life. I started getting sore joints (mainly wrists and thumbs) recently I've never much pain with them before so reading this makes me feel fortunate. I never go any tests done to confirm my diagnosis they just said that's what i had when I was kid. I have sister, she had preventive surgery on her eyes for retinal detachment and has only recently developed sore wrists so we both on the scheme of things are okay. She has 2 kids and neither of them have it.
