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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

EDS and marfanoid Body type

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Orthopedic/Joint › EDS and marfanoid Body type

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  • July 18, 2016 at 2:40 am #1026
    Nici32
    Participant

    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

    July 18, 2016 at 4:27 pm #5992
    Dr. Diana
    Keymaster

    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

    July 21, 2016 at 5:54 am #5993
    Nici32
    Participant

    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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