@TheEDSociety 1-) Thank you for your response. I am guessing you may already know the wait to see a geneticist for hEDS is very long. Also it doesn't seem from everyone that I have spoken to, that even when you have lots of symptoms, that a diagnosis is forthcoming. My children can bend...
@TheEDSociety 2-) ...their fingers & toes completely back to the back(s) of their hands. One's shoulders pull out even when just carrying a few bags. At least two of them can put their ankles completely behind their head, & the others almost can do it.
@TheEDSociety 3-) It seems unreasonable that if a child or even an adult can't do just one thing in the 2017 criteria, such as touch the floor with hands flat, & knees straight, that they are unlikely to get a diagnosis, & then will be pretty much ignored by most doctors, after the denial...
@TheEDSociety 4-) ...of a diagnosis. Many patients who have hypermobile fingers, (& even toes), but instead of having hypermobile knees, they may have a hypermobile back, or shoulders, maybe even the neck, none of which are counted as part of the Beighton (& or Brighton?), test, ...
@TheEDSociety 5-) ...but it certainly seems that these areas should be counted. Hopefully the announcement of the completed hEDS study on the candidate gene will change the tedious process of getting a diagnosis of hEDS. Especially when there are other symptoms besides hypermobility,...
@TheEDSociety 6-) ...it doesn't seem right for so many patients to be dismissed with little to no help for pain especially, since the pain apparently isn't much believed without a diagnosis. I also can't help but wonder if another type might be found during, or even after the hEDS studies.
@TheEDSociety 7-) ...The article in this link seems to realize that there are things missing in the diagnosis process of EDS:
edswellness.org/the-brighton-d…
edswellness.org/the-brighton-d…
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