It’s #RareDiseaseDay. Sometimes I don’t know whether I should post on this day because t
It’s #RareDiseaseDay. Sometimes I don’t know whether I should post on this day because technically #EhlersDanlosSyndrome is not a “rare” disease, it is just rarely diagnosed, however that second part is pretty important because the healthcare system often doesn’t acknowledge the damage this disease can do or often times I meet doctors who have no idea what it even is and when so many people have this condition and yet our healthcare systems can offer almost no support and on top of that gaslights patients into thinking that their pain and illness is all in their heads… then maybe EDS still has a spot at the table on rare disease day. I talk about #EDS so much on my social platforms in hopes of creating visibility for this condition and the various ways it can present and the various ways it can impact one’s life. I wanna thank you all for your support, for sharing my posts to increase visibility, and for sharing your stories online as well, I truly feel that doing so can lead to life altering changes, social awareness, and justice. [Image Description: a selfie of Annie in the sunshine against a tan colored wall, Annie has black hair in two braids and wears a zebra print mask and a black top] https://www.instagram.com/p/CL3RDZRjYd8/?igshid=1h8vmeznmojdr -- source link
#rarediseaseday#ehlersdanlossyndrome