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Ehlers-Danlos Support UK
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EDS and claiming disability.

This is a post on behalf of a friend of mine. She suffers EDS hypermobility type and is rapidly going downhill. Walking has become a struggle as she only has one ligament left in either ankle and her joints dislocate on the frequent. She is working but it's becoming increasingly difficult and I was wondering if it was possible to claim disability benefits with a diagnosis of EDS? Thank you in advance, any help is vastly appreciated.

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Hi, Yes she can claim, EDS is recognised in the benefit system, how much she can get depends how EDS affects her,

I have EDS hypermobility too, sadly I had to give up work 3 months ago and was very worried at first how I would pay my bills, it is a lot of paperwork to fill in for the benefits but its worth doing. but have been claiming ESA, housing benefits and PIP. I had my PIP assessment a few weeks ago and have been awarded standard daily living and enhanced mobility. It makes such a difference financially and now I'm looking at getting a motability car to get my independence back. I wish your friend all the best and do let me know if you have any other questions

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Thank you ever so much for replying! I know she's looked at getting a motability car but hasn't got it yet. I don't know how she is still working to be honest. I think lots of tramadol helps, but it's not good either way. (Though as a fellow spoonie I understand, even if I don't have EDS) Did you have to repeatedly reapply to get your benefits or were they pretty sympathetic. I know my friend is worried she will have to app,y loads before she can gets it, which given how much pain I know she is in, is unfair. She currently has ankle braces and things for her hands to stop her fingers twisting, I don't know if that's of any relevance to applying? Thank you again, it's greatly appreciated!

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I suddenly had to stop working because my mobility got so bad that it was impossible to even get to work. I was lucky with my benefits. I only applied once, I received the basic ESA benefit within two weeks of applying (still waiting for my medical for the ESA), it took about 4 weeks for my housing benefits to come in and I had my PIP assessment after about 6 weeks, they were very sympathetic and helpful to me, they just want to know how your symptoms affects your life, my results 10 days later and money came in a few days after that (including back pay)

I was very worried about having to go through the process when I first had to let go of my job, especially after reading stories from others about their negative experience with the benefit process. Your friend is lucky to have you as a friend.

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Oh god that isn't good. Have they got your pain under control yet? I'm glad your benefits are sorted, and so quickly too. My friend is pretty badly affected and I wouldn't be surprised if she will be forced to stop work soon. She's only got one ligament left in either ankle and walking is a nightmare for her. I just worry about her.

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I thought you had to be in receipt of DLA to qualify for a mobility car.

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I have absolutely no idea, her boyfriend just told me they had been to look at a motability car?

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I just did a quick search and you do have to be in receipt of high rate Disability Living Allowance mobility component to qualify for a vehicle on the Motability Scheme, so if that's what they are doing then she is receiving that benefit already. Or perhaps looking in the hope that she will receive it eventually. If she is receiving it then hopefully it would open some doors to other benefits. This link might help: citizensadvice.org.uk/benef...

A visit to CAB would probably be beneficial too as the benefit system is undergoing an overhaul it would make sense to get some professional advice. I do hope she can get what she needs.

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you do high rate

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Thank you ever so much! I shall forward all the information to her and hopefully things will become a little easier for her! By overhaul do you mean blatant cutting of benefits by a government who doesn't give a damn about disabled people or their quality of life?

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I have EDS hypermobility and my feet are my worst symptom too. I currently can't walk at all and use a wheelchair. I do still work full time, I want to stay at work. My work and Access to Work contributed towards the wheelchair, and I got a voucher from the NHS too. It's really helped me stay at work as I couldn't get there or get around at work at all. The chair I have is an ultra lightweight active wheelchair and is so light I can put it in the car myself even tho I have lots of issues with my hands and wrists as well. Perhaps your friend could look into that as an option. It's helped me get my freedom back and reduced the pain and fatigue from using crutches.

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i have trouble walking and if i do i am in severe pain with legs afterwards. i am interested in a lightweight wheelchair that can be put in car but have carpel tunnel in both hands. . the wheelchair you have how heavy is it and does it come apart

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Rowantree makes some good points - you mention that your friend has increasing difficulty with walking and working so I wonder if she has looked into all the other various options which might be available to her? For example, a wheelchair as Rowantree mentioned, a home assessment for equipment and needs, a workplace assessment to see if anything can be changed to make working easier.

Here are a few links - focusondisability.org.uk/wh...

gov.uk/access-to-work/overview

nhs.uk/Conditions/occupatio... (scroll down to long term conditions)

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I currently get higher rate daily living as simplest things as washing under arms can dislocate my joint leaving them painful after. With my mobility on my good days I can walk around town however afterwards I am sofa/bed bound for a week or so. And other days I can't walk far at all. I'm just wondering would I get higher rate mobility or not or standard rate. Each day does fluctuate with my mobilility

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Hiya AmyGreen12 , look at the descriptors on the benefitsandwork website re mobility, & there's a bit about it in my answer (below) to SatansLeftHoof , hope this is useful.

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Hiya SatansLeftHoof, you are a good friend.

There is a site called benefitsandwork, and it has a lot of info on it. If you/ your friend join, you can get detailed guides on filling these very confusing forms. You just work through the guides. And the if there is not enough room in the boxes for the answers, (very likely with EDS), just add more pages.

One thing people have difficulty answering is whether they can do something most of the time. You have to consider "can I do this reliably, repeatedly".

And the more evidence included with the forms (copies of clinic letters, GP letter that addresses the descriptors that apply to your friend), the less likely it is that your friend would have to go to an assessment.

In case you haven't picked up on this yet, PiP is the 'new DLA', (so if your friend gets the PiP version of the higher rate mobility component, she will be entitled to the Motability scheme).

On my own behalf I would like to thank all who answered because I panic at these forms especially at the horror stories, and it is really helpful to know that you have had a positive experience.

With my very best wishes, Boombiddy.

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