How I coped with.. Ehlers-danlos syndrome
There are several types of this rare genetic condition. I was diagnosed with the hypermobile one four years ago, although I’ve had signs of it all my life.
It causes partial dislocations called subluxations, easy bruising, significant chronic pain, fatigue and proprioception difficulties, which is issues with co-ordination and perceiving your body’s movement.
I also have other linked conditions, leading to nervous system and gastrointestinal problems. I’ve learned to be kinder to myself and not push my body too much. I had to give up studying music at university and working full-time was a strain.
I take different medications to manage some symptoms and use an active-user wheelchair with power assist 80 per cent of the time. I have a variety of daily living aids and splints and braces to stop my joints from hyperextending and causing damage.
Pacing is a big part of life for me – I have to plan activities carefully, so I can rest before and after.