When 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 MoreWhat genetic flaw is causing Ehlers-Danlos Syndrome in me?
Read MoreWhat genetic flaw is causing Ehlers-Danlos Syndrome in me?
Read MoreWhat genetic flaw is causing Ehlers-Danlos Syndrome in me?
Read MoreWhat genetic flaw is causing Ehlers-Danlos Syndrome in me?
Read MoreWhat genetic flaw is causing Ehlers-Danlos Syndrome in me?
Read MoreOù est mon défaut génétique?
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 MoreI had no idea how bad this chapter of my life would be, the getting off of the pain medicine part and recovering from that. If I had known, could I have gotten through it? I’m not sure.
Read MoreMeet all the opiates and opoids I had left in my cupboard once I was off. How did I end up with such a stockpile? I’m not sure.
Read MoreThis was the day, maybe the exact moment even, when the last of my last tiny opiate dose metabolized out.
Read MoreThe withdrawal got so bad, I wanted to check into rehab. Maybe Passages in Malibu?
Read MoreI remember my first trip to the Hard Drug Pharmacy, and my last, and all the ones in between. I hated being there.
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 More