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Hello, my name is Liz, and I live in Kingston, Ontario. I was recently

labeled with EDS by a hematologist. I am currently awaiting results of a

platelet aggregation study, as I have had unexplained GI bleeds for several

years. My hematologist says that these platelet problems are a rare

manifestation of EDS, and are related to a defect in collagen in the

vasculature. I have mildly hypermobile joints, gut pain and trouble

swallowing. My GP and I are certain that my son has also inherited this.

I also have Syringomyelia, which neurosurgeons at the Chiari Institute in NY

are finding may be related to EDS in some people. I had intended to see

these doctors in mid August, but am postponing this until my bleeding

problems are better understood.

I am looking for info on specialists in the area between Ottawa and Toronto,

as well a info on labs in Canada that perform the specialized testing used

to identify the EDS type. Any help you can give me would be greatly

appreciated.

Liz

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