“So I choose the Zebra pin as it represents rare/chronic illness, I really want to raise awareness for my condition ehlers danos syndrome type 3 as it’s been a hard journey to get diagnosed I’ve always had the condition but it was always dismissed as growing pains or hormonal when I was younger until the dislocation started, I saw many doctors, surgeons but they had no answers for me as to why my body was in so much pain from these dislocations & why they would happen daily, until I finally got to see a geneticists who after looking at me & my family history gave me a diagnosis. There has been a lot of blank face’s & remarks of your a ‘special case’ it feels very isolating & I’ve became house bound & this year I started my instagram @meeds_andmyhead page to discover people like me & make some new friends, I also hope by sharing my experience may help someone get help/diagnosis quicker then I did, it’s also helped me get over some pretty dark moments in my life. This year I’ve chosen to have my shoulder fused to stop the dislocations it’s a rare operation here in Newcastle upon Tyne so again I’m that ‘special case’ but if I can share my journey I hope it will bring more awareness of the rare/invisible condition.” @meeds_andmyhead
18 comments
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