A quick update. I traveled to London last week and was seen by Dr Hakim (sp?), not Professor Grahame as I was expecting, but that turned out fine. My diagnosis of HEDS/HMS was confirmed and I spent nearly an hour with him. He arranged for me to see a physio as well (Sophia M, I can't remember her surname) and she saw me, although the physio department was closing. I spent nearly an hour and a half with her.
The trip was definitely worth it, everyone was very friendly and helpful and Dr Hakim has kept me on his books and said I can contact him any time. We talked about how to set about improving my core stability, which I knew I needed but didn't know how to do it. We also talked about paing, pain relief and various other things.
Basically I feel reassured about what is happening to me, and the ways I can help myself, and how to cope with the things I can't do anything about, does that make sense? I am waiting for written reports from both of them and I know I need to have a hard yhink about my job and the hours I work, I have already set tyhe ball rolling for this in work.
I feel more confident now about asking for help, and I can explain better what help I need and why I need it. Having my diagnosis confirmed has given me (much needed) confidence to argue my own corner and ignore the sceptics. I also took one of my sisters with me and she was helpful in answering things about my childhood I didn't know. It has also helped me that she now fully understands what I am going through and can explain to others mfor me if I want.
I think I have rambled on long enough now, but writing this has helped me focus my thoughts. Thanks to anyone who has read this far. For once I feel
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!