The power of appropriate medical care for hEDS patients

Photo: NCI/Unsplash

For years, doctors, specialists and physios missed my hypermobile Ehlers-Danlos Syndrome.

Since I figured it out and was officially diagnosed in February 2023, so much mystery has been removed from my day to day life.

I now understand why my body behaves, aches, hurts, reacts the way it does.

And, though it has taken the better part of this year, I am each day learning things relevant to my hEDS and the suspected co-morbidities I have.

The hope is that knowledge really is power.

Not only that, but I am finding my way to experts who are not just EDS informed, but experts in helping patients with hEDS and chronic pain manage the linked issues.

For example, I am now privately having virtual physio once a monthly with an expert hEDS physiotherapist from the London Hypermobility Unit.

I have been seen by a pain management consultant through an NHS pain clinic I was allowed to choose myself. I was given a list of eight, and I contacted each one to see which clinics has understanding of the complex pain and injury hEDS patients cope with daily. I am now on the waiting list for a lidocaine infusion.

Finally, I had a virtual assessment with movement specialist and hypermobility expert Jeannie Di Bonne. I learned more about why my hypermobility injures me and causes me so much pain and already am making shifts to how I move, sit and stand to start training my brain how to move and ‘be’ more safely.

I’m starting this blog because I wish somebody has collated all the things I’ve painstakingly learned in the last 18 months.

I hope you’ll find some things in here that’ll set you onto a helpful path.

Feel free to email me anytime.

*Disclaimer. I am not a medical expert and none of my blogs are medical recommendations or advice. I am sharing my journey to give others insight.