The Alice Profile picture
Minister, she/her, #IPP, advocate, wife, mother, blogger/writer, occasional purveyor of poetry. Don't hate/Educate. #EhlersDanlos #Chronicpain #bisexual
29 Mar 20
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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.
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