Hyper mobility diagnosis and school support

[CheersMeDears]

DC is overly flexible and able to contort various limbs in all manner of impossible positions.

He has pain when writing, writes very heavy (sometimes ripping the paper with sheer pressure) and always complains that he has severe wrist pain after only two lines of writing.

He also finds sitting on the floor in assembly uncomfortable and his legs get fidgety so he has to tense and release to stop them becoming painful due to the fact he can't actually move around.

Today we had a lot of tears again as he couldn't face school because there is a lesson with a lot of writing. I need to ask for some sort of assessment in case we are talking hyper mobility and he might need some extra support.

It was suggested to me school can assess and link physio exercises and OT equipment like pen holders, but I read only a GP can actually diagnose using a Brighton Scale. So I'm not sure who to approach first. Does anyone have any knowledge or advice?

There's still an awful lot of misinformation / lack of belief and support about EDS.

Myself and my daughter both have EDS and PoTS. Ehlers-Danlos support UK are absolutely brilliant if you need any advice or help. I called their helpline and they offered to do some awareness sessions with school (they can do remote assemblies etc) They also have a great Facebook page, a magazine you can sign up for (my daughter has appeared in it) and they do some brilliant weekly live Facebook chats which are great as they often focus on the gut issues or the anxiety for example.

Pleased you got there in the end with your daughters diagnosis. My own daughters diagnosis was largely easy due to the family history of mine, but I got told "oh you can't have that it's very rare" etc so appreciate the struggle.

@Chrispackhamspoodle and for anyone else this is the link to the EDS UK website. The school toolkit is a great starting point and is on the home page.

EDS UK also help those who have hypermobility spectrum disorder. You don't actually have to have an EDS diagnosis.

https://www.ehlers-danlos.org/