Many thanks to ErnBird from the Ehlers-Danlos National Foundation Support Board for creating the graphic! Hope to get some awareness out there for my fellow zebras :)
(The familiar medical axiom is "When you hear hoofbeats, think horses, not zebras.” Unfortunately for those of us with a rare disease, we need doctors to see a zebra sitting in front of them, even though that may not be what they'd expected to walk in through their office door.)
More awareness among both doctors and laypeople would help a great deal -- you have no idea how many times a doctor has told me that I'm the first EDS patient they've seen, or that they haven't heard the name since they got a 30-minute presentation on it in medical school.
The problem is that EDS isn't actually that
rare -- they've probably had zebras sitting in that office chair before, but they didn't recognize them for what they were.
Underdiagnosis and undertreatment are serious problems in the EDS community, as well as unwarranted psychiatric diagnoses (hypochondria, somatic symptom disorder, conversion disorder, etc.) The pain and damage that come with EDS is very real, and it's not at all psychosomatic -- but it doesn't show up on tests unless they're sensitive enough to see micro-tears in fascia and frayed nerve endings from repeated joint dislocations and subluxations and allover faulty connective tissue.
So -- doctors, please keep an eye out for zebras!! Two signs to watch for are high arches that collapse on weight-bearing and an abnormal range of joint motion with complaints of pain that are not associated with inflammation or arthritis (note: patients with joint damage who have developed arthritis or frozen joints can still have a past history of hypermobility. Remember to use both the Beighton Scale and the Brighton Scale, which accounts for past history.)
Being more flexible is generally seen as a good thing, but it's also damaging to every part of our body -- so if you catch it early, you can often avert injuries that stay with us for a lifetime.
Thanks so much for reading, and for sharing -- I hope to see this gain some traction! #ehlersdanlossyndrome #ehlers
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