5: My life with Turners Syndrome- Pt. 1 Diagnosis

As I stated in my introduction part of why I set up this blog was to share my experience of life with Turners Syndrome (TS as I will refer to it)

I was not a 'sickly' child'. I did have feeding problems when I was a baby. I also had regular ear infections from an early age. But I was otherwise in good health and did ok at school.

My family moved around every couple of years while I was young. We lived in Ireland from the mid seventies to the early eighties. In 1983, when I was 11 we came back to live in London.

At this point my sister who was four years younger than me at 7 was already taller than me. My mother was understandably concerned. When she saw a BBC drama about a girl with a growth condition her concerns grew. She took her concerns to the school nurse at my school.

The nurse measured me and agreed that based on my parents height that I was not the height I should be. So I was referred on for tests at a local hospital.

I vividly recall the day that I had my blood test at the hospital. In the morning my Dad gave me a hug and told me it would not be as painful as an injection as the needle went into a vein to reassure me. My mum got me there in good time and I sat down to read 'What Katy did next' (I lost the book along with my Jane Austen bookmark). I played with some toys including a doll that reminded me of my great aunt's Japanese dolls which I was very fond of (they now live with me!) I looked out the window at the world outside. There was a considerable delay in my blood test and my Mum had to go and ask several times to get it done, getting more and more upset. Eventually a harassed blond doctor with glasses appeared and sat me by the window. She chatted with me and showed me the needle which she joked looked like a butterfly. I saw the vials fill.

Some weeks later Mum and I returned to the hospital for the results. The doctor announced tht news that there was indeed a problem. I had Turners Syndrome and would always would be small. My mum asked if there was something I should not know about the condition. The Doctor said there was. I was sent from the room.

Part of me is forever outside that room, not being allowed into the situation, having assumptions made about what is best for me. I do not blame my mum. She was in shock and had to do what was best given the situation. She was obviously deeply upset on my behalf.

My mother came from the room and tearfully held my hand. I knew something other than height was an issue. But I did not know yet.

To be continued..