Through it all, Bravo programming sustains me.
Read MoreI’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?
Read MoreWhat I am thankful for . . .
Read MoreWhen people have the same genetic defect, this causes them to have similar facial features.
Read MoreGlobal 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.
Read MoreOur diagnostic criteria was recently revised. Here it is. Read it for yourself.
Read MoreI had one opiate exposure when I was six months off my long-term opiate use, to which I had not consented.
Read MoreBefore 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.
Read MoreThe Power Plate brought me to Jerry Sher, my favorite physical therapist ever.
Read MoreI had a problem. I needed to be a more effective patient in physical therapy.
Read MoreI have a disease. It’s called Ehlers-Detective Syndrome.
Read MoreDo not slump. It hurts.
Read MoreBones, 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.
Read MoreIf you have lost your inspiration and it's nowhere to be found, go to Paris.
Read MoreFor a long time after that appointment with that chiropractor in 2006 who told me I had this weird thing I had been born with of joints bending backwards, the words “Ehlers-Danlos Syndrome” haunted me. I couldn’t say them.
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