Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Dear Liz, Welcome! Have to say this is the first time I have heard of someone being dx'd by a hematologist :-) It is also the first time I have heard of platelet problems being a rare manifistation of EDS and would like more info on this. I am one of those that they could not find a definitive link to other family members but my Mom does have a platelet disorder, don't remember the specifics right now. She does not currently suffer any particular problems from this so it is not yet being treated. If you or your doc can provide any further info, like articles etc., I'd appreciate it. As I think others have mentioned - any EDS testing is done by a Geneticist who will perform a skin biopsy. This is then sent to a lab in Seattle, WA. Currently only VEDS (vascular or formerly known as Type 4) can be definitively tested. They can also look for a Classical Type marker but if they do not find it that doesn't mean you don't have Classical - it is not definitive. There are some good articles on the CEDA site and under the Files folder on the Yahoo site, including an article called EDS Diagnostic Explanation by Maggie Buckley which explains in easy to understand terminology the process of geting a dx. Hope some of this helps you. Mostly hope you can get your bleeding problems under control! Good Luck :-) Hugs, B. HEDS, New Jersey, USA Quote Link to comment Share on other sites More sharing options...
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