Today I had my assessment at genetic testing at St Marys Hospital Manchester. I had been referred here after a consultant gynaecologist wrote to my GP to say I 'almost certainly' had EDS. I had never heard of it before. The consultant had told me to 'Google it. When I did I found I had most of the signs/symptoms associated except for hypermobility.
I was nervous waiting for appointed for last few months as a lot riding on it. It said to expect to be in clinic an hour and a half. I was there 10mins. I saw a geneticist who had a cursory look at my hands before asking if I could do 'party tricks' or 'gymnastics'. When I said I couldn't she asked about my family history mum/dad/siblings. I told her I didn't know family history as brought up in care. She couldn't quite grasp this concept and kept asking 'what about your father'? What about your siblings? I ended up bursting into tears as this is a trumatic part of my life.
She said she would write to my GP to say 'nothing wrong' but there is something very wrong. All my symptoms. No qualty of life. Now my GP will treat me even worse than he already does. Which is very bad.