#ehlersdanlossociety

#Repost @theokapioandp
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#repost from @taylers.danlos
The okapi is the new EDS mascot. Why? As many EDSers have heard, in medical school students are taught that “when you hear hoofbeats, think horses, not zebras”. This means to look for common causes to common symptoms, not rare causes. For a while, EDS was called a “medical zebra”, giving it the zebra mascot alongside many rare diseases. Recently the patient community has learned that the hEDS type(s) are not rare at all! This makes our mascot confusing since EDS isn’t rare, just certain types are. In light of patients widely disliking the Ehlers Danlos Society (due to a bunch of negative information on them being uncovered) and wanting to distance themselves, they’ve created a new mascot: the okapi. This animal is deer-like in nature (representing the common types), with stripes that make it unique and give it the rare twist. It’s also related to the giraffe, which is Marfan’s mascot! Even if you support the Ehlers Danlos Society still, I recommend accepting the okapi symbol too. It represents ALL of us, including HSD, which is what this community needs. Feel free to ask questions below ⤵️
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#EDS #ehlersdanlossyndrome #HSD #hypermobility #ehlersdanlosawareness #ehlersdanlossociety #notyourzebra #notrare #okapistrong #screwthezebra #disabledart #disabledartist #art #digitalart #procreate
https://www.instagram.com/p/B4-mw_3J7hK/?igshid=rxmq7gswluf5

The reasons for why the wonderful okapi has been chosen as the new mascot for HSD/hEDS!! Chosen by us, for us. Let’s reclaim our stripes!!
Repost @perpetual.reflections
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THE EDS/HSD OKAPI. .

Related to the giraffe (which is the symbol of marfans), the OKAPI is a unique creature that has zebra stripes, hooves, and is very similar to a deer. Theres the common look of the deer. But the rare pieces of the zebra. Sort of like EDS with its mixed bag of subtypes. those who have adopted the zebra stripes into their lives are still sporting a positive symbol, Rather than a reminder of the toxicity. .
Please share this to show support and tell the ehlers danlos society that they do NOT speak for us, as they do not look out for our best interests. .
#okapistrong #screwthezebra #zebrastrong #medicalzebra #ehlersdanlos #ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #eds #ehlersdanlossociety
https://www.instagram.com/p/B40FjZopgJx/?igshid=xks98n1xlchs

#okapistrong
#Repost @perpetual.reflections
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I no longer support the ehlers danlos society. A few reasons are featured in these images from @hell.on.wheelsxx and @livs.journal but more info is in @hell.on.wheelsxx ’s blog post which I’ve linked in my bio!!! This is only the tip of the iceberg.
They tightened criteria for HEDS without proper research and left a large group of patients with major life altering symptome and no diagnosis.

They don’t do much to advocate for the lesser known forms of EDS other than HEDS and CEDS
They endorse phsyicians as “experts” who openly call eds A PSYCHOGENIC DISORDER.
And so, so much more. Their expensive studies paid for by donations are NOT going to actually benefit the community and do nothing to improve our quality of life. This is reminiscent of autism speaks and as we #wearredinstead for autism, i will not be supporting the ehlers danlos society. .
I’ll post more info as it comes to me.
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#ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #hypermobileehlersdanlossyndrome #eds #ehlersdanlos #ehlersdanlossociety #vasculareds #chronicillness #chronicallyill #spoonie
https://www.instagram.com/p/B40EkGUJMSw/?igshid=109rqztr7tdbs

#Repost @perpetual.reflections
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#okapistrong .

With this project, we stand for the separation of the zebra and EDS, leaving it in its rightful place for rare disease awareness. .

With this project, we DENOUNCE the ehlers danlos society and all their corruption. .

With this project we support the unity of hypermobility spectrum disorders and ehlers danlos syndrome, because the separation was based on false information and anecdotal evidence. .

With this project, we will bring awareness to ALL forms of eds. NOT JUST HYPERMOBILE, VASCULAR, AND CLASSICAL. .

With this project, the okapi stands for the destruction of misinformation. .
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Ribbon by @theokapioandp
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#notjustbendy
#screwthezebra #ehlersdanlos #ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #eds #ehlersdanlossociety #zebra #medicalzebra #zebrastrong
https://www.instagram.com/p/B40CicIJZCR/?igshid=fy9uiny97tad