|
 James uses his own experiences to help
East Anglian Daily Times - 29 th April 05
18-year-old with rare eye condition beats 'great obstacles'
James used to be taunted by bullies for his rare eye condition.
But today the tables have turned - many of those who taunted him have apologised to James after learning more about his rapid, jerky eye movements.
James, 18, is now leading the way in informing other sufferers and the public about nystagmus, which affects between 1 in 1000 and 1 in 2000 people.
He has setup a website and been invited to become a trustee of the national self help group and James is now hoping to produce newsletters that can be distributed throught the NHS and opticians.
James, a pupil at Woodbridge School, has had more than 23,000 visitors to his website in three years.
He hopes the information he gives will dispel ignorance about the disability.
James, of Beccles, said; "Although i was diagnosed with nystagmus before I was one-year-old, my parents never really understood how it affected me until i was old enough to describe it myself. It would have been helpful if my parents were able to understand my problems better, when I was younger for example, when i was trying to ride a bike.
"My mother had always said how, when it was diagnosed, there wasa severe lack of information and support".
James admits the bullying that did not happen at Woodbridge School, made him feel tormented by unkind pupils.
'Confidence to talk about problems'
It was just one of several challenges that he has had to overcome but he now feels stronger because of this.
James said: "I started by providing basic scientific information about nystagmus and then by documenting my own personal experiences.
"I tried to include information to help enlighten parents, friends and teachers of other children with nystagmus, about the effect it has on sufferers' lives.
"About a year ago, I added a forum to the website. On the forum there have been hundreds of people register and post comments related to the condition."
His disability prevents him from enjoying many sports and he will not be able to drive.
"All my friends are learning to drive at the moment and it is difficult for me not doing so," he said.
"During my life, I have had a great deal of obstacles to overcome, but with the help and support and cooperation of my family, friends and teachers I have managed to overcome them all.
"I think in a way this has probably been an asset because it has given me confidence to talk about my problems."
Nystagmus can be inherited or result from a sensory problem. It can also develop in later life.
There is no cure for the eyesight problems and James is willing to take part in drug tests after his A level exams to establish if an improvement can be obtained for sufferers.
Research into the condition is ongoing at the University of Leicester.
By Richard Smith
 TOP
Fellow sufferers helped as James goes on the web
Beccles & Bungay Journal
- 13th
May 05
Beccles teenager James set up a website two years ago
to reach out to other people who suffered the same rare eye
condition as himself.
But he never expected the level of response which has
brought more than 10,000 visitors to the website from fellow
nystagmus sufferers and their relatives in search of information and
comfort.
One American family was so relieved to find out more
about the disorder that they invited him to holiday with them in
Texas.
And the website also caught the eye of the UK
Nystagmus Network which asked James, now 17, to be a guest speaker
at its open day.
He has had to turn down both ideas because he is in
the middle of crucial school exams.
But he is thrilled at the attention the website has
brought and the fact that it has succeed far beyond his wildest
expectations.
"There are something like 30 visits a day at the
moment, aswell as two or three emails from people asking advice or
telling me their experiences.
"Often the contact comes from parents whose children
have just been diagnosed with nystagmus and just want to know more
about it."
It was exactly the situation which persuaded James to
set up the website in the first place.
As he explains on the site: "I was diagnosed with
nystagmus before I was a year old and my parents never understood
how it affected me until I was old enough to describe what I
saw.
"It is my hope that i can enlighten parents, friends
and teachers of other children as to how nystagmus affects the life
of sufferers.
"It would have been helpful if my parents were able
to understand my problems better, when i was younger; for example,
when i was trying to ride a bike.
"Parents may therefore find my information and
experiences helpful and enable them to understand a child with
nystagmus and to plan for the future."
His own life has been disrupted by the disorder -
from people simply not understanding what it is all about, to
bullying at school and, now, the realisation that he will probably
never be able to drive.
"Everyone in my class at school are now talking about
driving, the tests, the questions and how it will help them. I just
have to live with it.
"My own future will b affected by it. I will have to
find a job where i don't need to drive."
But already, he is enjoying his first taste of
employment with a Saturday job in the menswear department of
Westgate in Beccles.
And the former Sir John Leman High School pupil, who
lives in Beccles, is studying for A levels in maths, further maths,
physics and computing at Woodbridge.
His aim is a university degree, probably in maths and
computing, but he has no clear idea of what career he would like.
He is promising, however, to keep the website going,
at least through university.
He is boosted by sponsorship from Kings Hill
Childcare Services - brought about because one of the directors
daughters is a nystagmus sufferer - and technical help from CWA-Design
of Southwold, which helped get his website higher up the search
engine rankings for people looking for nystagmus.
His reward comes in knowing that he is helping people
hwo have come through the same trials and tribulations as himself -
and hearing of how much they value his website.
"I was contacted by the grandmother of someone in
America who had nystagmus saying that they had accommodation in
Texas and would like me to go over there to stay and go on a fishing
trip.
"It makes me feel I have certainly done what i set
out to do."
Visit the website on:
www.nystagmus.co.uk
By Roy Strowger
TOP
Making Eyes on a website
The Eastern Daily Press - 27th
November 03
James was born with a rare eye condition that
has limited his life opportunities and used to make him the subject
to ridicule at school.
With courage and determination, he has risen above
the taunts and learned how to make the most out of living with
nystagmus.
But now he has gone one step further.
To help other sufferers and their families, James,
aged 15, from Beccles, has designed and launched a website providing
up-to-date information about the disorder - and candidly documenting
his own trials and tribulations.
Nystagmus is and eye condition affecting about one in
every 1000 people, and it is characterised by rapid, jerky eye
movements, which often seriously impair vision.
It may be inherited or result from a sensory problem,
and can develop in later life, sometimes as a result of accident or
a range of illnesses.
James, who attends Sir John Leman in Beccles, was
diagnosed with nystagmus before he was a year old, though his
parents never understood quite how it affected him until he was old
enough to describe what he saw.
On his website he explains what it is like to live
with a disorder and how it has affected his life, from taking notes
in the classroom to getting bullied.
"I was called names by many people until they got
tired of me not responding or until they understood nystagmus," he
says.
"One of the common phrases I heard was 'wibbly-wobbly
eyes'. I just ignored them until they went away."
Since the website was launched this year, people who
used to tease James have sent him e-mails apologising for giving him
a hard time.
But James holds no grudges.
"All that's been and gone," he said.
A self-proclaimed computer fanatic, James had wanted
to create a website for a while but did not know what to do it on.
"Mum suggested I build one about nystagmus," he said.
"Having been a parent, she felt that when she had me
there wasen't enough information about it."
The aim of the website is to enlighten parents,
friends and teachers of other children with nystagmus about the
effect it has on sufferers' lives.
When not revising for his GCSEs or updating the site,
James enjoys many hobbies.
He has achieved grade five at piano and saxophone,
plays squash regularly and is a very keen angler, having learnt to
adapt his technique to compensate for his eyesight.
By Hugh Browning
TOP
|
