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LIVING WITH STARGARDTS
DISEASE
Paulina's Story 
Onset of 'Stargardts
When at 13 I began having difficulty
reading the blackboard, my vision was tested. As my twin brothers also
had vision problems, we were referred to the eye specialist at a local
hospital, who referred us to Mr. Bird at Moorfields Eye Hospital where
we were diagnosed as having Macular Dystrophy and, more specifically,
Stargardts Disease. We were told that it was hereditary and that both
of our parents were carriers of the gene - my father was Polish and
my mother English and there was no history of such eye problems in their
families. Our younger sister was not affected.
We were told that we would have to learn to adjust and live with
Stargardts and referred to the RNIB for low vision aids.
Coping with Stargardts at School
After the initial onset of
Stargardts, there was a very gradual deterioration in my vision. I had to
copy notes etc. written on the board from friends' books. If I knew I had
to read in class on a particular day, I would "fake" an illness and so
miss school! One finds all sorts of weird and wonderful excuses to avoid
admitting that there is a problem - I wanted to be like all my friends.
Music played a large part in my life at school. I played the flute in the
orchestra and sang in choirs and began having real problems reading the
music.
The heavy reading load in English was a real challenge for me and I
began to be very behind in course work. By reading the Coles notes on
various books, I was able to cope in exams without actually having read
the whole book!
Choice of Career
My dream career always was to be a teacher.
After doing the first year of the A-level course in Geography, Music and
English, I applied to a Teachers' Training College that specialized in
Geography - my chosen subject. A letter from the College informed me that
academically I was accepted but because of my vision they could not accept
me. I was not registered as a "disabled person" at this stage so did not
know that colleges had to accept up to 3% of their intake from "disabled"
persons.
Subconsciously I had been very worried about the stress of having
Stargardts and developed a stomach ulcer at the ripe old age of 18!
Once my college rejection was known, I could openly explain just how
bad my vision was - and then my music teacher understood why I was not
exact when writing music compositions when my note would cover at least
three options!
As my dream career would never be a reality, I decided that carrying on
with the struggle to keep up with the course work, I would find a
satisfying job working with children - so I left school.
Working life
My first job was working in a children's home
but this did not offer the same challenge as teaching. I went through a
number of jobs that had no real future. Finally, the RNIB informed me of
their secretarial school. They had a residential college in the heart of
London and I attended for 6 months getting a sound secretarial training
that was modified for those with visual impairments.
I worked as a secretary in various levels of management for some 15
years. I used a computer large print program in the later years but could
otherwise cope quite well.
The Dating Game
Going to dark discos with friends was a real
challenge and just forget eye contact from the opposite sex! However, I
did not put my lack of boyfriends down to my vision problems - just that I
had not met the right boy.
In My Twenties
By this time, I had real probelms seeing bus
numbers, recognising people that drove by in cars or on the other side
of the street. I was able to read large print books. I moved into an
apartment complex in London that was owned by a blind association and
all my neighbours were visually impaired - many of whom I knew from my
secretarial course.
Travel
Cheap air flights from England to the States became a
reality thanks to Freddie Laker and so I planned a solo trip over to the
States visiting distant relatives in San Francisco and then taking the
Greyhound bus over to New York to visit my Mum's old school friend. This
opened up a whole new world. Although my vision was limited, experiencing
life in other lands was very fulfilling. At 29 I took my backpack and
headed off alone to the South Pacific visiting Hawaii, Fiji, the Cook
Islands, Tahiti, New Zealand and Australia.
Marriage
Having visited America, I toyed with the idea of
moving over there for a year but the Green card problem was a bit of a
hinder and going to Canada was much easier. I found a job as a mother's
help and headed to Vancouver in 1980 - only planning to stay one year but
11 years later I was still there and had become a Canadian Citizen! I saw
a TV program about the visually impaired learning to ski - growing up in
England, this had not been an option! I was seen to have real
determination and was asked if I wanted to compete in the British Columbia
Winter Games - this led to being invited to go to Norway to represent
Canada in a yearly ski event for the disabled and then to becoming a
member of the Canadian National Disabled Cross Country ski team. My life
then revolved around training for the season and little else!
At a World Cup in March 1989 I met Bertil, who was a member of the
Swedish team. That summer he came to stay with me in Vancouver for 8 weeks
and that December we were married! We moved to Sweden in February 1990.
Bertil's visual impairment was not hereditary and after genetic
counselling, we decided to start a family. Björn was born in March 1991
and Jessica in January 1993.
Later years
Moving to another country has been the biggest
challenge as it is very hard to make new friends as I find it hard to
recognize people. A new language was also challenging. My kids were my
eyes - and they began to read numbers and words at an early
age!
Once the kids were a little older, I took
a multimedia course and now work as a web developer. I have all the
adaptive equipment I need with a lovely flat screen monitor on an arm
so I can have it closer to my nose on "bad eye" days!
My only access to print is via a CCTV or talking books which can be
very frustrating as I read large quantities in earlier years and enjoyed
"seeing" the written word.
Still, in my spare time I run by myself, can get out and about and ask
if my eyes fail me. As my mother always told me, "Your eyes may not work
that well but your voice does"!! There are far worse ailments to have
than Stargardts - and in fact having Stargardts opened up all sorts of
hidden worlds for me.
May the force be with you!
Paulina
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