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New Manual Wheelchair - Kuschall K4

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I’m a 33 year old woman with Ehlers-Danlos Syndrome amongst other health issues. At the very basics, this condition means that my joints sublux (semi dislocation) and dislocate very easily. It doesn’t take a lot of force to dislocate a joint; the action of opening the fridge door can dislocate any of the joints from my fingers up to the vertebrae between my shoulder joints. Sometimes a simple action like that will dislocate more than one joint.

A lifetime of joint injuries means that some of my joints are permanently out of place, or are very damaged. As a result of this, I can’t walk very much; just standing causes a lot of pain, and walking gives me very severe pain. I use the mobility component of my DLA to pay for an electric wheelchair, which means I can get out by myself. I have a manual chair provided by the NHS, which should mean that I can get out and have freedom when I go in my boyfriend’s car (the electric won’t go in the car), but because it is heavy and not an active frame, it is very difficult for me to push myself in it, and trying to do so causes dislocations and a lot of pain immediately and for days afterwards whilst the joints repair, which they do so a lot more slowly than in a person without the EDS.

The NHS have told me that I need a specific type of wheelchair; a rigid frame active chair, but that they cannot supply that in my PCT. They will, however, provide me with a voucher to part pay for the chair, and they told me that I need to apply to charity to get the rest of it funded. The best manual chair that they can provide me with will be far too heavy for me, and will therefore cause lots of dislocations, a lot of pain, and mean that I don’t use the chair as much as I should be doing. This is the case currently; the chair I have supplied from the NHS is stored in the boot of my boyfriend’s car, and I only use it if we go out shopping together, and he pushes me. I can’t push myself much in it, and although I should be using the chair inside my house, I don’t, because it’s totally unsuitable and causes damage to my joints.

When I tried the k4, I realised that I could move around in a totally new way. I can balance it perfectly leaning back, which is actually a technique to get up small steps / kerbs, but feels fun! I can do a wheelie! I can race around and spin and it's all really easy and liberating. I can use it without feeling the weight of the chair on my joints! It's totally unlike the experience of manual wheelchairs that I've had so far.

I have applied to two charities to help with funding for my new chair and they have offered me part of the money towards the chair, but I am left with a short fall of £926. I need to raise this money in a month as the first charity had a time limit of a year on their offer and it has taken me a year to find another charity who would offer me money.

I need this new chair to be independent, able to push myself around, rather than relying on my boyfriend to do it. It will also allow me to be more active, which would let me lose some weight, and be healthier; using the chair would strengthen the joints in my arms, which would help to lessen the impact of dislocations.

So I'm asking for any money people could spare towards that amount. Anything towards it would help us out, no matter how small the amount, it would be less that we have to raise ourselves.

Thank you for reading all of this, please shar e it amongst friends who may be able to help.

Organizer

Nicola Jubilee
Organizer

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