SearchPersonal stories about 'Management'
EDS and HSD cannot be ‘cured’ but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing. These are a stories submitted by members explaining some of the ways they have managed specific symptoms of their EDS or HSD.
12th June 2025
My experience in the Stanmore pain programme
Henry Gregor A few years back, I was fortunate enough to secure a place on the three week Residential program at Stanmore. I first heard about the program, whilst attending an EDS conference in Ghent, Belgium, when, during the lunch break interval, I managed to have a chat with Dr Cohen from Stanmore. It was […]
28th January 2025
A mother and daughter story
By Sharon and Meg Parent story – Sharon The path to diagnosis of an illness can be a long and hard journey particularly when the symptoms lead you to consider something as rare as EDS. It was when Megan was 11 years old that a young, newly qualified Osteopath related Meg’s collapsing ankles, gastrointestinal symptoms […]
13th February 2024
Wheelchairs, Snow and Ski
Ellie talks about her determination to get back to Skiing and have it gave her back small parts of what she had lost through living with EDS. Her story is about determination and looking to see if you can do the things you love differently so you don't lose the joy they gave you.
11th May 2021
It’s an EDS thing!
Lawrence tell us his story to diagnosis, management and beyond
11th May 2021
Following your dreams with wonky joints
Loki T-Rex tells us about his aspirations for the future and how clinging inspires him, whilst helping manage his EDS
29th April 2021
A transforming OT appointment
Erin Simons talks about the experience she had taking her seven year old son to an Occupational Therapist and the impact it has had on his school life
29th April 2021
The dark horse
The multi-award winning film maker and EDS sufferer based in the Midlands has recently embarked on a very personal insight into living life with the challenging and often mis-understood condition. In this article Ashleigh candidly shares her reasons for opening up, her latest film and some very exciting news...
28th April 2021
Sacral nerve stimulation therapy for bowel and bladder problems
Faye talks about how EDS affected her bowl and bladder and how Sacral nerve stimulation therapy has helped her manage it.