It was supposed to be a consultation. There were 45 minutes blocked off for it. We entered the room and met someone I presumed was the geneticist but all I think I heard her say was her name, not who she was in the scheme of things. My nerves had got the better of me […]

It’s been four months since the paediatrician uttered the words Ehlers Danlos Syndrome in relation to my 6 yr old little boy, and since then, I’ve read and researched what I can. I’ve seen the genetic counsellor and this afternoon we have our appointment with the geneticist where a diagnosis, I presume, will be final. […]