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Are there things that you avoid doing with Ehlers Danlos Syndrome?
Support and IndependenceChallenges and Experiencesasthmabronchitishernialymphedemadifficulty in breathingfatiguepainhiplegsspine

Are there things that you avoid doing with Ehlers Danlos Syndrome?

This is Robert and here he discusses the things he has learnt to avoid doing because of pain and fatigue associated with Ehlers Danlos Syndrome.

Transcript (auto-generated)

This transcript was generated automatically and may contain errors.

Are there things that you avoid doing? Before my accident I found it difficult going shopping because of my legs. I have bad legs, I have lymphedema, very very severe lymphedema and they're very painful and I find walking is painful. I'm getting PIP and I found that walking up, I could walk about 15 to 20 metres, then I had to stop because the pain in my legs and my hip and my spine was too much. and because of my hernia I was having difficulty as well and I suffer fatigue, heavy fatigue as well over the last four years. I find difficulty in breathing and I suffer from asthma as well, when they ask my pumps, and bronchitis, but you've got to get along. I had a chap out last week looking at the mobility scooters because I don't know what I want. The hospitals told me the most I'll be able to walk that will take time will be about 50 meters that's out and back and that that'll be on crutches as well and they said to do that it's you'll be doing well so I thought well I'll get myself a mobility scooter and somebody said to me why don't you get a mobility car where you've got paddles you don't need your legs so I'm looking into that as well, because I'm stuck in those layers, because all my family are all far away and they've got families to look after, so I can't depend on them. All my friends all live the other side of London as well, so I've only got my neighbours, but I live in sheltered accommodation, I live in a bungalow in Touchwood and the neighbours are lovely, you know, they they keep on saying, do anything you need Robert, we'll do it for you. But you can't ask them because they're disabled as well. You know, I mean, so the most I get is open the door and walk out a little bit and walk back again.

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