Leah wrote asking if there were other parents of children with Ehlers-Danlos syndrome. Her son was just recently diagnosed and she wanted to touch base with other parents to see how it had affected their children’s vision. Her son Nolan’s vision went from “normal” to amblyopic with significant astigmatism in the course of one year, but has been fairly stable since then. She’s wondering if there is likely to be significant vision changes with growth.
For Little Eyes
A community for family and friends of babies, toddlers, and young kids in glasses, eye patches, or contacts.
For Little Eyes 
We have 7 children, several with an unspecified collagen disorder. Ehlers Danlos was strongly suggested by the geneticist but he only tested for the vascular form, which we know we do not have. Now my littlest one, Lilli, has glasses….it does concern me, since we are told we have “interesting optic nerves”. I would absolutely love to talk ED and collagen issues!
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