Thanks for adding me! Anybody out there with a delayed diagnosis? For years my daughter lived with the frustration of being notably smaller than her peers, she had bilateral cataracts, and then complications with ovarian failure. All the while the doctors were dismissing these issues, saying that her cataracts were just a fluke, and we should be thankful that our kid was small and not fat. Now, at 16 she's been diagnosed with DG. All those years I was dismissed by doctors, now we find out her complications could have been avoided if we knew, so infuriating!
These are true stories and messages from moms I have received since I began this journey researching DG in 2008. Sadly I didn't start foldering the messages til 2012 but please see that many are in the same boat as you-confused and with many questions. The post is not to answer these questions specifically but to post to record the issues and questions for the public.