This is Robert and here he discusses his concerns around passing Ehlers Danlos Syndrome to his children and the pathway he was offered to diagnose them.
Transcript (auto-generated)
This transcript was generated automatically and may contain errors.
But when I went to the Croydon EDS groups, because I've got a boy, he's 45 in November, and I was frightened because he would get the Ehlers-Danlos group and he never, thank goodness. And then when I went to the EDS group in Croydon, I found out it's only the woman that can give the syndrome to the children. And I thought, oh, that's a good thing. And then when my daughter was born, I thought that's okay, she'll be all right as well. But you know what, I tried to get her tested for the Ehlers-Danlos. Won't do it. Won't do it. Won't get a positive result until she's about 12 or 13.
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