Macular Degeneration Awareness Month – Julie’s story

I first  noticed a problem with my eyesight at the age of 28, with a black spot in my
central vision. My son was one year old. Within six months I had only peripheral sight
in my left eye. A year later the right eye developed a similar pattern. I had to stop
driving, and lost my sense of independence, relying on others to take me where I
needed to go. I thought my life as I knew it was over, I would not see the children
grow up, or enjoy the normal things in life. Thankfully, the deterioration was very
slow but every time my sight changed life became more difficult until I became
accustomed to it.

I was diagnosed with PIC (Punctate Inner Coroiditis) at Moorfields Hospital. It is a
rare condition which seems to attack young blond haired, blue eyed, short sighted
females. I had never heard of it and was devastated! Life had changed dramatically
and not knowing anyone else with sight impairment I felt very alone despite the love
of my family. The Social Worker at the charity Jersey Blind Society (now known as
EYECAN) was lovely, but at the time, there was no social opportunity available for
someone of my age group and the average age of members attending the Day
Centre at Westlea was about 80.

A few years later, with my second son at school, I was introduced to a lovely lady
who was sight impaired. She was the first person I had met like me, and although
our conditions were very different, she introduced me to a more positive world – I
knew I was not alone and that great things could still and would happen for me. I had
not thought like that for a long while. She has been a strong and positive influence
on me ever since. I started to meet other people like me through a social support
group for younger sight impaired Islanders, which met at EYECAN, thus introducing
me to a whole new world.

In 2010 I was asked to attend a meeting of the UK Macular Society who were hoping
to set up a support group in Jersey to bring people together and support each other.
I joined the Society and was keen to help wherever I could – I have been running the
group ever since. There are so many different Macular conditions, and the Society is
there for anyone with Macular whether they become a member or not. EYECAN has
been very supportive of the group, with Community Team staff attending our monthly
meetings and bringing us information on technology and the support offered by the
Charity. Our relationship is continually gaining in strength and we now meet at
Westlea EYECAN’s centre every month.

For more information about the Macular Society please visit their website
(www.macularsociety.org). There are so many things on offer, including Telephone
Befriending, a Helpline, up to date research information and much more.
For information on our local Support Group please call me on 745863. We meet on
the second Monday of the month from 2.15pm, with chat, tea, guest speakers or trips
out. It is always good to talk, share tips and recommendations and generally to know
you are not on your own. Transport can be arranged.

Through running the support group, I was asked to join the EYECAN Management
Committee as a sight impaired member, and I am very happy and willing to assist
wherever I can. EYECAN is a very valuable asset to the Island as a whole and I am
proud to be a part of it. I really enjoy meeting others and attending the Wednesday
Art Activity Day and learning new skills with new friends. Over the 30 years since I
have known about the charity EYECAN, so many things have changed dramatically,
and all age groups now benefit from their services and activities.