Hypermobility Spectrum Disorder, daughter, aged 13

MaidMarion

Honorade said:

@MaidMarion, how do you do social prescribing for your yoga class? 

Our Pilates is the same price than a gym membership. But I had to take a loan. I can’t work since my daughter’s birth, but the medical Pilates help. 

Your GP can refer you for social prescribing for any longterm or permanent health condition, and that can be a pilates class.
You can also contact "Healthy Living" online at your council.
They can give you access to free pilates or yoga classes.

I am in a patient involvement group at the local surgery and just heard a presentation about it.

Bless

chiarieds

Hi @MaidMarion - with hypermobility, your joints are then moving more than normal. This causes excessive 'wear & tear' so those with hypermobility can therefore develop osteoarthrosis (I have this in most of my joints). I'm far less hypermobile than I used to be, but, if you're assessed properly, you should be asked if you were historically more hypermobile.

I'm fortunate in that I'm a physiotherapist (long retired), so know the right sort of exercises to do, which has helped retain my now somewhat limited mobility. Sorry you didn't find a physio understanding hypermobility.

I had a bit of a fight with ensuring myself & children had the right diagnosis.....I found out what we had through my own research, then had to wait 2 & a half years to see a geneticist who specialised in Ehlers-Danlos Syndrome, & other connective tissue disorders to get this confirmed.

As mentioned, a rheumatologist we were then referred to tried to overturn our diagnosis. It ended up with him asking me to correct mine & my son's letters that he was going to send to our GP after I'd emailed over a corrected version of the letter he was going to send to my daughter's GP. I wanted to ensure they had the correct diagnosis & medical information in case they needed it in the future.

It's not been easy, & I didn't get diagnosed until I was 47. It shouldn't be the case, but EDS is still poorly understood by some Drs (& physios).

Thank you for your kind words.

chiarieds

Hi @Honorade - in a way I should be shocked by your GP's response, & whilst mine have been great, several consultants have not; it's been a fight is all I will say.

I had hoped that sharing the GP's toolkit with your GPs might help as they're often unaware of the diverse impacts EDS can have. This is the link I gave: https://gptoolkit.ehlers-danlos.org/   I hoped that making your GPs better aware of this might help.

There is some useful info on the EDS website, tho some is also out of date. I knew the founder of the EDS support group, who gave me all the literature she had when we met, & supported me in raising concerns about some neurological concerns I had in a few of us with EDS. Sadly things are not the same since she retired.