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EhlersDanlosSyndromeWarrior

@EDS__Warrior

Jan 19,

@lunettaporchett

@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 1-) Oh! I'm there, in that spot, just about 2 years ago, I was able to touch both hands flat on the floor, with my knees straight. I haven't stretched in all of that time, & now, even though I am only about 2" away from it, while still keeping my knees straight, he dismissed...

@lunettaporchett

@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 2-) ...the idea of EDS almost immediately. I believe I was 50, at that time, when I decided to get serious about wanting help. Now I've just turned 51, & I hurt EVERY DAY! He said go have your kids diagnosed, & then let me know what happens. Meanwhile, I have been taking...

@lunettaporchett

@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 3-) ...Diclofenac pills for my shoulder problems, but they also seem to help my hips a little, & I think they take the edge off of the pain in my feet a little. I mean that & two acetaminophen tablets make it it slightly more bearable, enough that I get out of bed. I know...

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EhlersDanlosSyndromeWarrior

@EDS__Warrior

Dec 19, 2021

@TheEDSociety

@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

@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

@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...

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EhlersDanlosSyndromeWarrior

@EDS__Warrior

Dec 18, 2021

@TheEDSociety

@TheEDSociety 1-) Could my family be enrolled? We have at least 5 of us with symptoms, & have ruled out other types for 3 of us. One family member has the COL12a1 gene. This family member has contractures of the thumbs. Another has dislocating shoulders. Two have Chronic Acid Reflux,...

@TheEDSociety

@TheEDSociety 2-) One has Scoliosis. We all have Piezogenic Papules. At least 3 of us have perfume allergies. I had Placenta Abruption. Several of us have slight Ichthyosis, which was mentioned when I looked up the COL12a1 gene. I have had Bilateral Foot Surgery for Plantar Facitus,...

@TheEDSociety

@TheEDSociety 3-) Bilateral Carpal Tunnel Syndrome - (CTS), which according to Dr. Ericson who spoke with the Ehlers Danlos Society, around 50% of people with EDS,or HSD are misdiagnosed with CTS, & it is probably the most misdiagnosed problem in EDS. HELP EDS hurts! ...

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