Katie (13) has Turner Syndrome
In July 2002 I was diagnosed with Turner Syndrome. I was nine years old and I had been to the doctors with a bed wetting problem. I remember the doctor saying that it didn’t matter about my bed wetting problem and I would grow out of that soon enough but I was too small. That’s all I can remember until my sister and I were going to summer camp in Wales.
We went off all happy and laughing. The week we were away was great. When my mum and dad came to pick us up I was on a real high. We went straight to our nan and granddad's who lived not very far away. In a way I could tell something wasn’t right. We stayed at my nan and granddad's for a week and on the Monday my dad said he was taking my sister swimming, I asked if I could go but my dad said no. I remember being quite upset, but later I didn’t think very much of it.
First reactions
After Monday everyone seemed upset – my mum, dad, sister and my nan and granddad. We left to come home on the Saturday, a week after we had got there and travelled home. We got in and I went on the computer to play a game and my mum and dad were having a whispered conversation. Then mum and dad both came in told me to sit down they had something to tell me. They told me that when I had been at summer camp the test results had come back and it was Turner Syndrome. My first question was “What?" |

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We must have talked for about two hours. I had all these questions going through my head and I had to get them out. As I was gradually told more I began to make sense of a lot of things. My dad apologised for not taking me swimming but it turned out that he had taken my sister swimming so that he could tell my sister. They had wanted to tell me at home. I went to bed understandably upset, and I don’t think I got much sleep. However, when I woke up the next morning I almost felt that nothing had happened. In September I started my growth hormone and have been on it ever since.
Living with Turner Syndrome
That was four years ago now and at thirteen I am still under the same doctor as the one who diagnosed me and I wouldn’t have it any other way. I am also under a doctor at Great Ormond Street and she is great and very supportive. I love life. I have some terrific friends who are very supportive. I have had trouble with other people at school but that’s stopped now. I won’t EVER let my TS stop me from doing what I want and it shouldn’t stop anyone else. Everyone has their own problems and that’s how I see my TS, as just a little problem.

The people who have helped me through everything definitely has to be doctors, but even more than them (sorry!!) is my family. I don’t know what I would have done without them. They have been my shoulder to cry on and my trampoline when I fall.
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Last updated: April 2008
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