Having Fragile X syndrome – a personal account
| Published date | 15 July 2011 |
| Date | 15 July 2011 |
| Pages | 26-28 |
| DOI | https://doi.org/10.1108/20441281111165571 |
| Author | Katherine Zwink |
| Subject Matter | Health & social care,Learning & intellectual disabilities |
Having Fragile X syndrome – a personal
account
Katherine Zwink
Abstract
Purpose – The purpose of this paper is to present the viewpoint of someone with Fragile X syndrome.
Design/methodology/approach – The paper presents the author’s views and experiences of living with
Fragile X syndrome.
Findings – The paper provides the author’s perspective on diagnosis, the impact on family life, dealing
with stigma and the effect that the condition had on school, college, work and interactions with other
people.
Originality/value – The paper provides a unique insight into the day-to-day experiences of living with
Fragile X syndrome.
Keywords Fragile X, User view, Behavioural problems, Families, Bullying,
Educational systems and institutions
Paper type Viewpoint
I am 28 years old and I have a brother,Andrew, who is a year younger than me. Andrew was
diagnosed as having Fragile X when he was five. I did not know I had Fragile X until I was 13.
I clearly remember that day because mummy collected me from school and we had just
arrived home when she broke the news to me. It was a huge shock and I cried.
Growing up with Andrew was very hard because he had behavioural problems and got into
so much trouble with the other children in our street who did not understand him. Andrew
would become upset and angry and then I would try to stand up for him and get just as upset
as he was. If anyone is horrible to my brother I get really angry and upset. Also, everything
we did as a family depended on Andrew. Where we went and how long we stayed anywhere
depended on how Andrew was behaving and no one realised that I was anxious and
struggling because I had Fragile X too.
At primary school I had problems with maths and struggled a bit in class. I was shy and the
girls were not friendlyexcept for Emma, who was shylike me and we got on really well. We were
best friends until I had to leave this school when my family moved. After we moved, school got
more difficult for me. The maths was getting harder and I did different work to the other
children. The boys were really mean. They would throw my things around the classroom. They
thought this was funny. The girls were not friendly either.I did not have a friend in this school
and felt lonely most of the time. In my last year my teacher said to my mum that she was not
sure that I would cope at comprehensive school. So I did not go to the comprehensive. I went
to a very small girls school where I got lots of help from most of the teachers and I remember
my form teacher was very lovely and supportive. In my second year, it was decided that
I should go down and repeat the first year again. The other girls all seemed to be growing up
faster than me. I got teased a lot and if it had not been for Clare, who was in my class and
looked after me and often defended me from the other girls, it would have been really awful.
At the end of my second year at this school, it closed and I moved to another girls school,
which was much bigger. It had a remedial department and I got a lot of support.
PAGE 26
j
ADVANCES IN MENTALHEALTH AND INTELLECTUAL DISABILITIES
j
VOL. 5 NO. 4 2011, pp. 26-28, QEmerald Group Publishing Limited, ISSN 2044-1282 DOI 10.1108/20441281111165571
Katherine Zwink, UK.
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