Complications associated with Ehlers Danlos Syndrome that can impact the body.

I joined the Early Standards Group about three years ago, four years ago, it was a year before my accident, I had tendon repairs on both knees, that's why I'm in this wheelchair, I was told didn't walk again. And I fought it and I can walk a little bit. But that's with the help of the Royal National Orthopaedic Hospital of Stanmore. But throughout my life, I've tried to be normal. And I did all the games that all the children did at my age. I was always sending out of hospital because I was injured. My skin, it's like paper. If I fell over on rough ground or rough pavement, it just split wide open. Playing football and heavy sports in the playground, I was always getting kicked. Then I would have to go to the hospital and they used to give me drips. They used to take me to theatre, iodine in the leg, which was concerned, drain the fluid off and then keep me in hospital for two weeks to rest up. That's how they did it back in those days. I've had many, many operations as well. I was still having operations, whereas I thought as I'm getting older, it'll be getting easier. But I was told by rheumatology department at Croydon University Hospital last year, no Robert, it doesn't get easier, it gets harder. As you get older, it gets harder. And to quite honestly, I'm not being nasty to anybody, but the NHS haven't got a clue on how to treat patients with Ehlers-Danlos, because they're not informed. And then when you start talking to doctors about your condition, it goes in one ear and out the other, because they don't know nothing about it. It's like when I have operations, the healing capacity for a normal person would be, say, two weeks. With me, it can be six to eight weeks. I just had a prostate operation in mid-July there, and I'm just getting over it now. So that's the recovery period. It takes longer. So any major, major operations, I dread to think what it'd be. Well, my knees, look at my knees, it's been over two years. And you know how I've done my knees, Leah? Just stepping off the pavement, about four inches high. Leah, I laugh because I've had it all my life. Of course, of course I get depressed at times, but you've got to get out of it, you've got to, you know, kick your backside and get on with life. Because sitting about moping doesn't help. Of course I had lots and lots of pain but I'm used to it. What sort of pain do you get? I get muscle pain, I get joint pain, I have a hernia in my stomach, I've had five operations with it, because what happens, as soon as they stick the inner skin together, it just splits wide open again. So I have stomach pain on a daily basis. I have spine problems. I have arthritis in my spine, I have spondylitis. I have got curved spine. And I just have that daily. And I'm on painkillers. I keep myself on cocodomo. I don't want to get it, I tried tramadol and they were going to put me on others, but I couldn't hack it because, oh, I was in fairyland. I was all over the place. I said, no, no, no, no. I said, give me, just keep me on cocoa, I can handle that. And providing I keep on taking it every four or six hours, I'm alright. But if I miss a session, then the pain kicks in again.