The Child Growth Foundation
Katherine - Turners and Me

I was diagnosed with Turner Syndrome at birth; Mum tells me I was a ‘classic’ case. I have been very fortunate and not suffered any major health or developmental problems linked to the condition. However, after diagnosis had been made I was not monitored in the way that babies with Turners are today. I first remember being told about Turner Syndrome at about the age of seven, Mum took me to see a doctor at Great Ormond Street Hospital. I remember being very excited about the train journey and a new dressing gown. In fact I was extremely fortunate; my parents had heard about the introduction of human growth hormone after a neighbour read an article in the Guardian, and they arranged for referral to Great Ormond Street. By the time of this first appointment, human growth hormone had been discredited; only a few months earlier it would have been prescribed and I could have faced the dangers of CJD. From this time I had six monthly trips to London until I stopped growing and twice I had an overnight stay at the Middlesex Hospital to take part in research on the production of growth hormone in girls with Turner syndrome. I enjoyed the train trips to London and sight-seeing in the capital, not to mention beef burgers on the train home! For the first few years I had oestrogen and steroid treatment and I began injections of synthetic growth hormone at about the time I started secondary school. My GP practice has always been very helpful about arranging referrals and prescribing expensive growth hormone.

As I grew older I understood more about Turner Syndrome. It is important not only to explain Turner Syndrome to girls at an early age but to update the knowledge appropriately as the child grows up. For example I remember it was a biology lesson before I understood how chromosomes work and that this had not been explained to me. Also while I knew I would not be able to have children from the beginning it was very much later when I realised that this meant that I would not go through a natural puberty.

When I was sixteen and had recently completed my GCSEs I stopped growing (4’’10, not bad though I would have liked to be 5’’) I left Great Ormond Street and joined an adult Turner clinic at the Manor Hospital, Walsall.

Academically I did well at school, though I found practical subjects such as art and CDT very difficult. Mum and Dad being teachers and very supportive of our education helped. The secondary school was not told about my Turner Syndrome, mum and dad felt that once a disclosure was made they could not control who had information about me. Fortunately I was able to effectively drop these subjects at fourteen and take Drama instead, which I enjoyed. I also found Maths hard but, with the help of home tuition, I achieved a C at GCSE which allowed me to apply for university. I did get extra time in GCSE and A-Level exams because of malcoordinated handwriting at speed, although at University I felt that this was no longer required. I really enjoyed my time in the sixth form where I could concentrate on subjects that really interested me; History, English Literature and Law; gaining two A’s (in History and General Studies) and two B’s (in English and Law). A small school based sixth form where I knew everyone also suited me socially. I studied History and Politics at Keele University. I was rather nervous about this; more about living away from home and the social side than academically. However I soon settled in at university and made friends joining the Film society, Community Action, Amnesty International and the Paradise Club (a social organisation linked to the Christian Union). I didn’t encounter any significant problems at university and ended up with a 2:1.

I decided to continue with my academic career and studied for an MA at Warwick University. This involved moving back home for financial reasons. This was also the time when I managed to pass my driving test at the fifth attempt. I enjoyed my research so much that I expanded my dissertation into what I hoped would be a PhD. This was not to be the case but, after four years spent studying the campaign for equal pay in teaching and the civil service, I was awarded an M. Phil, the second highest degree. I am now about to begin a career as a librarian.

I hope that, if you do have any doubts, that this will reassure you that having Turner syndrome does not mean that you cannot achieve well academically and indeed in any other area of life.