Reader request – looking for other parents of kids with Ehlers-Danlos syndrome

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.

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One response to “Reader request – looking for other parents of kids with Ehlers-Danlos syndrome

  1. 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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