Does anyone else know about stickler syndrome?

Posted by cholstein79 @cholstein79, Jan 29 11:19pm

If anyone needs help understanding stickler syndrome, feel free to reach to me, my daughter and I both have it.. . I know the internet will drive your mind crazy..

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John, Volunteer Mentor | @johnbishop | Jan 30 8:22am

Welcome @cholstein79, Thanks for starting this discussion on such a rare condition. There have been a few members who have mentioned having Stickler Syndrome but I couldn't find any discussions. The National Organization for Rare Diseases (NORD) does have a good list of patient resources but hasn't been updated since 2015 - https://rarediseases.org/rare-diseases/stickler-syndrome/#program-resources.

You are so right about Dr. Google being able to drive you crazy. Are you able to share any resources that you have found helpful?