12/09/2015

The day I received my diagnosis














9th May 2013, a day I will never forget! The day I was given the diagnosis EDS Hypermobility, something I had never heard of before.

I was a nervous wreck waiting to go in for my consultation and couldn't relax, I kept pacing up and down. The consultant was running late which didn't help me, I was worried he might say "it is all in my head" and would be a waste of time. Thoughts kept going through my mind about not wanting to stay here any longer and then my name was called and my anxiety went up, I was greeted by Professor Rodney Grahame, a global expert in the field of EDS so felt very privilaged to see him. He asked me lots of questions about my medical history, some of which I wasn't totally certain about, then he carried out a thorough examination to test my range of movement in the main areas, which were elbows, knees, fingers and thumbs and said I was very hypermobile, giving me a score of 7/9 on the Beighton scale, a test used to determine Hypermobility. Outside of the scale my shoulders, cervical spine, thoracic spine, hips and small finger joints were hypermobile. My feet flat and pronate on weight-bearing, something I have had since a very young child. My skin he said was soft and showed increased stretchiness in the phase of taking up slack, which I didn't really understand what that meant at the time. I knew how soft my skin was as people have commented on this before. He asked me to stand and made comments about my knees going backwards and how poor my balance was.
Based on his clinical findings he made a diagnosis of hEDS and referred me to Stanmore Hospital for 3 weeks rehabilitation as my muscle tone was poor.
I was relieved to get a diagnosis after years of not knowing what was wrong and to know it "wasn't in my head" as I am sure some of the medical professionals thought this.
I left the consultation room with mixed feelings, relieved to have a name for what I am suffering from but anxiety about what it means, will I deteriorate over time? I had so many questions I needed answers to now but wasn't provided with any literature or resources about the condition and didn't know anyone else with it I could talk to.    
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