The story of Kasia
I have had bad joints since I was born; when I was younger I was constantly complainging of my joints hurting and with sprains. Come around to Middle School and suddenly I had scolosis. High School came around and came to the conclusion that I must have a hard to control autoimmune disease because no matter what drugs I was on I still had joint pain even if my bloodwork got a bit better. Everyone told me that I had to get used to the pain, that I was being a baby and just needed to get over it. It took my joints randomly sublexing and giving out on me to finally get me the proper diagnosis, Ehlers-Danlos Syndrome type 3 or the Hypermobile type. Now I’m resigned to a life of joint pain and braces because finally I have a name to my disease and though it is rare, I don’t feel alone.
Meet others who understand on the international EDS community on RareConnect.org:Â https://www.rareconnect.org/en/community/ehlers-danlos-syndrome