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Re: 8-year-old newly diagnosed
Posted by kathy on 12/16/2008, 8:18 pm, in reply to "8-year-old newly diagnosed"
Hi Mary: |
My 12 year old has just been diagnosed and we are very frustrated with getting information or finding any Doctors who can help. She feels very lonely for being different and would love to know there are other children out there who are like her.
: 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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