This is Robert and here he discusses his experience with diagnosis of Ehlers Danlos Syndrome.
Transcript (auto-generated)
This transcript was generated automatically and may contain errors.
How were you diagnosed firstly? I was just going to say that to you, believe it or not. When I was about seven or eight years old in Glasgow, I was diagnosed with Christmas disease. And I came down to England to live with my parents. And at the age of 18 or 19, I was admitted to Westminster Hospital over Albert Embankment on Christmas Eve. And I got put in the newsletter saying, Christmas disease patient admitted Christmas Eve. I became famous. So then they did some tests on me and then they came up to me and said, Robert, you haven't got Christmas disease, you've got Ehlers-Danlos. I said, oh, what's the difference? He said, a big, big, big difference. And that was it. I was told what I could do and what I couldn't do. And that was it. I got a special card given to me on certain things like sutures had to be avoided where necessary. I bled in inwardly, instead of outwardly like a haemophilic, I bled inwardly. That was about it really.
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