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EDS and marfanoid Body type
Posted: 18 July 2016 02:40 AM   [ Ignore ]  
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Hi EDS ers,

I have EDS Type unknown ( Up to now).
For years Doctors have been thinking I could suffer from marfan Syndrome.
I am very tall, Long limbed and have a long thin face.
Genetical testing was marfan negative. A skin biopsy although was EDS positive.
Is there anyone out there also having EDS with marfanoid Body Type? If so, which Type of EDS are you diagnosed with?
I am wondering if it is a special Type itself of EDS.

Best regards!

Nici

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Posted: 18 July 2016 04:27 PM   [ Ignore ]   [ # 1 ]  
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Hi Nici, there are many of us with Marfanoid habitus (the appearance of Marfans, but without meeting the critieria), including myself and my kids. I’ve seen classical EDS and hypermobility forms suspected. The big underlying issue, though, is we don’t know the genes for hypermobility EDS (and 50% of those for classical). The diagnosis is of little or no help for us, I’m afraid. In fact, they can only say “presentation consistent with EDS”. Until we recognize the genes responsible, we are all sort of guessing. :(  Meanwhile, at least you can enjoy your height! lol

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 21 July 2016 05:54 AM   [ Ignore ]   [ # 2 ]  
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Hi Dr. Diana,
Thanks for your reply. I Try to enjoy my height and ignore
the neck pain I got from it.

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