I went to the N. London clinic with as much info as I could possibly have (which isn't much as my family history is scant). The team was charming although everything seemed a bit shambolic - glad my OH was with me as he was able to remind the nurses and staff of things they had said they would do, but eventually forgot. While my rheumy had scored me as a 4 on the Beighton Score, they scored me a zero (fair enough, I've never considered myself 'bendy'). The general feeling was that visually, I didn't seem to have vascular EDS - although my skin is still pretty see-through and some of the scars I have don't look 'quite right'. It was difficult to explain that the symptoms I have may be 'normal' for a woman in her 40s, but I've had them since I was 6. Still, that's the sort of thing I tend to deal with. What they did do was the blood test - which I assume isn't just something they do on a whim, and not if they think you don't have it. So while they were very reassuring, they did take my blood and told me it would be probably a few months before I hear back.
So done and done, and I guess we will see how things go.