Steph’s Story

I’m Steph from Middlesbrough England. I was diagnosed with TS when I was just 5 years old so I was on injections for 11 years. I was taken off injections a couple of months ago so I’m just on tablets now. I remember the hospital visit very well because it was over easter and I distinctly remember my dad bringing my easter eggs up to me. They did blood tests, scans allsorts to me and came up with the conclusion that I had Turner Syndrome.

They put me straight on growth hormone. My mum hadn’t heard of Turner Syndrome before so she was a bit baffled. They sent a growth nurse round to help us get set up, Diane she was called. It’s was fun though because she had us injecting oranges and bandages. It was helpful aswell, I decided to do the needles in my thighs. Because I was so young I didn’t like the idea of being “stabbed” every night. I used to run away when my mum said time to have your needle. We finally found a soloution, numb my legs with ice cubes. Sounds odd but it worked. I done the needles myself for about 8 years. When we have school needles people are all scared and I just say I have one every night, so it doesn’t bother me.

When I was about 12 I was put on Oxandrolone. It didn’t seem to bother me until night time when I got hot flushes so I told the doctor and he told me to come off them and see if it made a difference, and it did so I’ve stayed off them. Then I was given Oestrogen 18 months ago. I started off with 2 mg on alternate days, then it went to 1 mg everyday and then it went up to 5mg everyday. I’m on 10 mg daily now. I don’t mind taking small tablets but the big tablets leave a powdery feeling in the back off my throat and it’s horrible.

My pedeotrician, Dr Kibrigie (Kibbie for short), has been wonderful, I don’t think I could have went through all this medication and hospital visits without him. Julie Stonehouse, my growth nurse, and him have made my visits pleasant and they always make me feel welcome. My hospital visit in June 2003 took a turn for the worst when they told me I hadn’t grown at all which was quite worrying because I wasn’t supposed to stop growing until 16, as an estimate. They told me that if I hadn’t grown next time then I would have to come of my needles which I didn’t want to do because I want to grow as much as I can. But then on December 4th 2003 I had a brill hospital visit. I had grown just under an inch, taking me to 5ft tall, which was my target. I was very pleased. I would like to reach about 5ft4 or 5ft5 but I don’t think that’s possible so I’m going to stay real and aim for 5ft1 or 5ft2.

I’ve lived a normal life and there’s nothing that I haven’t done that I wanted to apart from my secret ambition which no one knows about except me. I have been very lucky in regards to side effects of TS, some people have webbed neck, toes and fingers, learning difficulties but I don’t. I do have problems with Mental Arithmatic and recall but that’s it.I also have puffy hands and of course short stature and problems developing and infertility.
I’d just like to say to any mum’s out there that if your child has been diagnosed with Turner Syndrome then please don’t worry. There is lots of support available online and of course from your doctors. I would advise you to start a support group as well which is what my mum and I have done. All you teenagers out there should deffinatly go to the TSSS Conference because I found it so beneficial. It was brilliant because everyone around you knew what you were talking about and knew what you were going through.