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Did you know of anyone else in the family who had Ehlers Danlos Syndrome?
Health and Well-beingEmotional and Social SupportEhlers-Danlos syndromeheart problemschest painsheart operationblood vesselsveins

Did you know of anyone else in the family who had Ehlers Danlos Syndrome?

This is Robert and here he discusses his family history of Ehlers Danlos Syndrome.

Transcript (auto-generated)

This transcript was generated automatically and may contain errors.

Did you know anyone else in your family who had EDS? No, nobody, nobody. I'm the only one. How did they take that? They didn't know because I wanted to be normal so I didn't want to tell them and when I was in and out of hospital, I didn't tell them the reason why. I just said to him, oh, I've got paper skin and left it at that and even up to, I was admitted to Croydon Hospital last February for chest pains for about six times because I've got heart problems and they're trying to get away to do it. Well, I don't want them to do anything Leah, because of the surgeries, the operations, it takes so long to recover, and the old heart operation is major, very, very major, and I wouldn't want it, because I don't think I could go through it, Leah, you know what I mean, not because of the pain, I think my body's not equipped for it, because of the vessels and the veins, the blood vessels, so I don't think I would get through it, to be quite honest. Anyway.

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