My son was just diagnosed with hypermobility type ehlers-danlos and will soon be seen by cardiology. He would really like to connect with other children with the disease. I went onto the US site and joined but wasn't able to find the children's postings. Could anyone help? I'm in Montreal and I found that information is lacking terribly for newly diagnosed patients. We feel we've been given a diagnosis and sort of told to just live with it until a symptom gets really bad, then you can see a specialist for the specific symptom. Is that the general experience people have had?
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