Global Genes Rare Patient Advocacy Summit
I go every year. This conference is my favorite place to be someone who was born sick. You can watch the videos here.
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What genetic flaw is causing Ehlers-Danlos Syndrome in me?
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What genetic flaw is causing Ehlers-Danlos Syndrome in me?
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Où est mon défaut génétique?
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Do not slump. It hurts.
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Bones, collagen and joints need impact.
At home, I do jumping jacks, ballet leaps, run in place, occasionally do a few burpees and sometimes run around the neighborhood for a bit.
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I'm a geek by marriage. I'm Gumby by birth.
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If you have lost your inspiration and it's nowhere to be found, go to Paris.
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I love to swim in the ocean. It is where I wanted to die.
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Now that I am and up running, Sexy asks me, “What do you want to do? Where do you want to go?”
Celine.
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After I got off all the heavy pain drugs, and time went by, my brain still did not work very well.
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If I had only joined the circus, I would have been one of the freaky back benders. Eww.
My small joints are my biggest problems. Feet, hands, spine, ouch, ouch, ouch.
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