I found out I had Turners Syndrome when I was 15 years old, which is quite late in life. It was all a big shock at first. I was very overwhelmed by the amount of problems that were associated with this syndrome, and the amount of medical tests I had to have. However, I soon realised that most girls with Turners will only ever have a very small fraction of these problems in their lifetime. Fortunately, the only medical problem I have so far is a horseshoe kidney, which is not even anything to worry about.
The scariest part of finding out I had Turners Syndrome came when I went for my second hospital visit. I was told that I a form of Turners Syndrome mosaicism with fragments of Y chromosome. I was told that this meant my ovaries ran a strong risk of being or becoming cancerous. My doctor recommended that I had them removed as soon as possible. A few weeks later I had the operation. It was all a success and after a few days I had nothing to show from it apart from a couple of small scars.
Because of this excitement, I hadn't given my height a second thought. However, about 8 months after I found out I had Turners Syndrome, I decided to go on growth hormone. I didn't hold much hope for it doing much at first, as the doctor told me he thought I'd stopped growing. However, after just over 10 months I have already grown from 141cm (4ft 7 and 1/2) to 149cm (4ft 11) I am still growing, and I have been predicted to reach 5ft 1 or above!!!
So that's my story so far. If you have just found out you have Turners Syndrome, the biggest advice I could give you from my experience is to go to meetings and get in contact with other people affected by Turners Syndrome. Besides making loads of great new friends, it really is the BEST way of learning what you want to know about it.
