I've received my letter from the N. London EDS clinic for vascular EDS investigations. I'm due in toward the end of the month. I'm currently trying not to brick it - it's not so much finding out if I do have it, but finding out I don't and my symptoms are 'all in my head'. I've spent so many years being told I just need to 'suck it up' that I've tried to just steer as far away from looking up anything about vascular EDS (not to mention the only time I've seen cases about People of Colour like myself, it's been post-mortem studies....soooooooo I've decided to just not even go there really).
But is this really the best approach? I want to be able to present a case for myself, to ask questions, and I've lived with these symptoms all my life - to me, it's normal. I had no idea my fingers weren't supposed to bend QUITE that far, and I always knew my skin was so see-thru I look like a roadmap. So I don't even know what to suggest or talk about.