Mr. Pennington and I ended our Disneyland 18 miles of walking weekend by skipping the shuttle and hoofing it 2 miles back to the hotel.
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Five years of injecting myself with Vitamin C everyday.
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Through it all, Bravo programming sustains me.
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I’ve had pneumonia more times than I can count. No one can tell me why this happens. My squishy lungs? My deformed ribcage? Who knows. You too?
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Surgery, again! I have needed a few, starting very early in life. They have all been a special treat from Ehlers-Danlos Syndrome.
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What I am thankful for . . .
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I got an infection at my injection site.
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When people have the same genetic defect, this causes them to have similar facial features.
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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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Our diagnostic criteria was recently revised. Here it is. Read it for yourself.
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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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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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What genetic flaw is causing Ehlers-Danlos Syndrome in me?
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Où est mon défaut génétique?
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I had one opiate exposure when I was six months off my long-term opiate use, to which I had not consented.
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Before anything else, if you are taking pain medicine, you must consider: how is your pain? How will you treat it? You cannot know how much pain you are in until you are off drugs. Bit of a problem.
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