Proposed Updates to the 2017 hEDS Diagnostic Criteria

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In this video, I share my thoughts on the proposed updates to the 2017 hEDS diagnostic criteria. What changes would you like to see? Let me know down in the comments!
New May 2023 Pediatric Diagnostic Criteria: www.ehlers-dan...
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Опубликовано:

15 окт 2024

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Комментарии : 8

@LadyPashta Месяц назад

Thanks! I didn't know there was one for children!

@teresareinert8271 9 месяцев назад

Makes total sense to add them.

@Catlily5 9 месяцев назад

The changes you mentioned sound good to me!

@DiariesofaDisabledmom 8 месяцев назад

I was just diagnosed with heds and my ankles are hypermobile so hope they add that. Can’t tell if my neck is hypermobile but sounds like it may be. I was shocked cuz I wasn’t a very flexable kid. Couldn’t bend in crazy ways but some things as a kid also make sense now

@cathierainwater 9 месяцев назад

Thanks for this info! I have hEDS and knew my youngest has it (my oldest does as well, both undiagnosed...oldest has appointments but it's a long wait...she's 20). I told my youngest's pediatrician about it and she seemed to dismiss some of the hypermobility in her elbows and the papules in her heels...she scores a 6 on the B Scale (I do too), plus has anxiety (and ADHD). I think the number 1 thing I'd love would be for pediatricians to learn to recognize it. Knowing early could be helpful to prevent future complications.

@ehlersdanlosandi 9 месяцев назад

I absolutely agree! Getting diagnosed early could help so many people.

@WooWoo-co4jf 9 месяцев назад

I agree other joints, my feet are extremely flexible, the bio mechanics podiatrist says they're like 18 month olds.

@WooWoo-co4jf 9 месяцев назад

I'm told my elbows are hypermobile but I can't see it myself, I'm more hypermobile from my feet up and my back. My shoulders siblings when I get to teach too far, I'm sure we've all done it trying to reach something at the back of a shelf or under a bet and ouch...numb arm, feeling fizzy and do some niggles to get it back in. Children I taught knew about it for several reasons, one being if a looked annoyed because I was in pain I didn't want them to think I was angry at them. The other was for practical reasons, they needed to know what to do in an accident or incident, why I wouldn't always hold a child's hand on stairs and...when I subluxed. A couple of children would be in their feet announcing "we'll go get Mrs A or Mrs C and they would appear like magic lol. Had a few things happen in school when adults didn't know and children would tell them like little doctors :)