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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.
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