Ehlers-Danlos Syndrome (EDS) & Hypermobility Spectrum Disorders (HSD) Awareness Month

chiarieds

May is EDS & HSD awareness month. What does it mean to me?

I had had problems since being a teenager (tho my Mum later told me she'd taken me to our GP when I was about 9; his diagnosis 'growing pains').

I don't think I thought much about the problems I had as they were just a part of me tho my Mum said don't mention these when I had to have a medical to join the physio school (I didn't)!

Once a physio student my anatomy teacher kept saying, why is it that you're always so different?

After qualifying I met this locum GP who said I think you have a rare disorder, but I can't remember the name of it. He did say I had Arthrochalasia Multiplex Congenita, which my orthopaediac textbook assured me was just likely hypermobilty of my knee joints.

It's a term I strangely remembered, & the 'arthrochalasia' bit later took me to a USA website that mentioned EDS where I thought, no, I don't have that tho I did have hypermobile joints.

Then to be honest, I didn't think much more about 'it,' whatever 'it' was. I'd been getting a bit worse, but that was just my 'norm.'

It was only when my eldest daughter started to have similar problems that I thought we perhaps did indeed have a genetic disorder.

I was then privileged to meet Valerie Burrows the founder of the UK's EDS support group. She gave me all the literature she had about EDS & recommended a specialist who later diagnosed my son & I (our eldest daughter was diagnosed a little later).

We kept in touch, & she remembered that I'd wondered if anyone with EDS also had Chiari 1 Malformation which I suspected was somehow linked. Valerie asked me to write about this association in the last 'Management of Ehlers-Danlos Syndrome' booklet. She believed in me tho all the other chapters were being written by Drs!

Sadly I learnt that Valerie died on Good Friday. I just want to write this as a testament to all that she started in 1985; so much that has been learnt since then about EDS & it's comorbidities, & to celebrate her ongoing legacy.

EDS & HSD are frequently misdiagnosed & it can sadly take years to get the right diagnosis. When I first read the literature Valerie gave me it said EDS occurred in 1 in 20,000. Then it became 1 in 10,000, then 1 in 5,000, but 'perhaps' it's even more common than that.

For anyone wanting to find out more, please see: https://www.ehlers-danlos.org/

about EDS & its comorbidities, which might help your GP: https://gptoolkit.ehlers-danlos.org/

about EDS & Chiari 1 Malformation the best resource is ASAP's past video conferences:

https://asap.org/conferences/past-conference/

EDS can be so much more than 'just' issues with your joints.

durhamjaide2001

I Follow a lot of ESD people on YouTube I don't personally have the condition but I'm hypermobile.

Holly_Scope

This is a great post. Thank you for taking the time to put this together @chiarieds, really insightful read.