Great article. I do need to respond to the bit about retiring the type. There are immensely practically-useful types, plural... but that's a whole article too. I'm working on it.
I literally learn more and more every time you write. I cannot thank you enough for all your effort, knowledge, wit and wisdom written into what you share. With two adult daughters already diagnosed, I’m seeking to make my dx official on paper this year. Been verbally dx twice by same geneticist who dx my girls, but don’t want to wait another 3-4 yrs on his waitlist so, moving ahead on my own. We’ve made progress this year based on tools you’ve given us. Keep doing what you do! You do make a difference
Popping in to say: not all hypermobile bodies are gumby, some of us are tinmen. No one would have spotted me from across the room. I was nearly frozen before I was twelve (I almost died of Salmonella Typhi at 8 months old) and I WAS frozen by 30 and couldn't even raise my arms above my head.
I dismissed being hypermobile for decades and ended up severely injured because of that dismissal. The only reason I figured it out is the diagnosis of MCAS and POTS led me to read Transforming Ehlers-Danlos Syndrome and I saw myself in those pages so clearly I laugh-cried at the absurdity I'd missed it.
Yoga fully revealed my underlying instability, but not until after a major spine injury, so I try very hard to raise awareness that some of us zebras don't look very bendy.
Great article. I do need to respond to the bit about retiring the type. There are immensely practically-useful types, plural... but that's a whole article too. I'm working on it.
I literally learn more and more every time you write. I cannot thank you enough for all your effort, knowledge, wit and wisdom written into what you share. With two adult daughters already diagnosed, I’m seeking to make my dx official on paper this year. Been verbally dx twice by same geneticist who dx my girls, but don’t want to wait another 3-4 yrs on his waitlist so, moving ahead on my own. We’ve made progress this year based on tools you’ve given us. Keep doing what you do! You do make a difference
Go to kindergenomeeds..com and email Dr Wilson and he can help get your dx. And thank you for the feedback :-)
Popping in to say: not all hypermobile bodies are gumby, some of us are tinmen. No one would have spotted me from across the room. I was nearly frozen before I was twelve (I almost died of Salmonella Typhi at 8 months old) and I WAS frozen by 30 and couldn't even raise my arms above my head.
I dismissed being hypermobile for decades and ended up severely injured because of that dismissal. The only reason I figured it out is the diagnosis of MCAS and POTS led me to read Transforming Ehlers-Danlos Syndrome and I saw myself in those pages so clearly I laugh-cried at the absurdity I'd missed it.
Yoga fully revealed my underlying instability, but not until after a major spine injury, so I try very hard to raise awareness that some of us zebras don't look very bendy.