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To every doctor and/or provider who says that #EhlersDanlos diagnoses don't matter: Until I learned that my fibro diagnosis was a #misdiagnosis, I was improperly treating myself and causing further injury. It's the difference between acute/chronic injury.
I didn't know I had it for 35 years. I say 35 years because #EhlersDanlos is a birth to death condition. It took 35 years to get me diagnosed and multiple providers. I hope that the @AmerMedicalAssn starts pushing for #EhlersDanlos eduction and soon.
I firmly believe that there are multitudes of people just like me who were #misdiagnosed as having fibromyalgia or some other pain condition, even having symptoms that don't completely add up to fibro, who actually have a type or several types of #EhlersDanlosSyndrome.
I'm grateful to have been able to tell my daughter about it. She knows now that it is genetic and that I am at least a third generation #EhlersDanlos patient. She knows the base signs to look for and knows that she at least has #hypermobility.
#KnowingvsNotKnowing is the difference between spraining your ankle and walking it off or spraining your ankle and properly wrapping/caring for it because you know you're probably going to repeat that injury in your lifetime and want to prevent it if you can.
#KnowingvsNotKnowing is the difference between dislocating your joint multiple times and knowing how to put it back in and dislocating your joint multiple times and having to go to the emergency room each time or ignoring it and causing further tissue damage.
Any provider who tells another person "Your #EhlersDanlos diagnosis doesn't matter" ought to be fired from their position and have their license stripped from them. The medical negligence in those words is strong. #EhlersDanlos diagnoses matter.
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