I have Ehlers Danlos Syndrome, a connective tissue disorder which causes me to have lots of dislocations in most of my joints and causes a lot of pain, fatigue and other various issues. I used to be very active in able bodied sports and was very independent but have needed to rely on a wheelchair more and more as time has gone on. The NHS have provided a basic active wheelchair which has helped me a lot but is no longer meeting my needs. My chair is heavy putting strain on my joints and causing more fatigue than necessary, the back rest gives me bad posture, it doesn't fit properly meaning it doesn't "hold me together" so even a bump in the road causes a dislocation, it is also very bulky making me feel self conscious. I would like to buy a made to measure chair meaning it will be exactly how I want it and not simply parts taken from a stock room that are nearest to my measurements. This chair will be much lighter, will cause me less pain allowing me to sit in it for longer, has a torsion seat which adds suspension and less pressure on my hips, and will hold my hips and knees close together which will stop unnecessary dislocations and pain.
I have been measured for a Roma Vida which is ready to be made when I have the money. I have looked into and applied for a few grants but there are limited resources for 18-25 year olds so have hit a dead end. This chair will allow me to be more comfortable in order to live as normal life as possible such as getting out more with my assistance dog, doing my best at uni and playing wheelchair basketball.
Any donation would be greatly appreciated and please feel free to share.
- Jen Bamford
- Cathy Carlsen
- Penelope MacLeod
- Gwalia Singers
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