Page 34 - N&V Winter 2019

Eclipse News

The Light Sensitivity Support Group

lightAware card At a recent hospital appointment my request to wait in an unlit
room was being ignored until I produced the card and I was
I have lupus and developed photosensitivity eight years ago provided with a room immediately. These cards are available for
which has had a major impact on my life. I am photosensitive to a minimum donation of £2 (https://lightaware.org/about/
artificial lighting which has a greater detrimental effect on me
than exposure to sunlight and has resulted in me being unable to lightaware-card/) and I would highly recommend these to all
continue in employment. other light sensitive people, mine goes everywhere with me and
takes so much stress out of daily difficulties with lighting.
Within minutes of being exposed to artificial lighting I feel sick,
dizzy, my pulse races and on occasions my face has become In response to my request for a card, I received many emails with
partially numb. The after effects, which don't always appear information to support my situation with difficulties in the work
immediately, are joint pains, fatigue, headache and more of the place. I was also put in touch with a lightAware volunteer who
usual lupus symptoms. spoke to me on the telephone, offering me support and sharing
her experiences and practical ideas to help. I found the contact so
I experience great helpful and emotionally supportive just speaking to somebody
difficulty in public who understands and lives with the same difficulties.
places when explaining
why I need to be away Since my initial contact with the charity I have contributed to
from overhead lighting information presented by the charity to Public Health England
and frustratingly this regarding the effect of LED lighting on light sensitive people.
seemed to be worse at I can't urge you enough to at least take a look at the website.
medical appointments - There is a whole wealth of information available from the charity
such irony! In a who clearly need our support to continue the excellent work that
desperate bid to find they do for us all. www.lightaware.org
something to help I
trawled the internet Jessica - East Midlands
and came across
‘lightAware’, a charity Our thanks to Jessica for highlighting the work of this excellent
"...founded to respond to the needs of those whose lives and charity. Members may also be interested to know the LightAware
health have been profoundly Ambassador for Lupus mentioned by Jessica, is a member of LUPUS
affected by the ban on incandescent UK working closely with LightAware.
lighting and the development of
new forms of light."
(https://lightaware.org/about)
LightAware produce a credit card Eclipse Badges
sized card which helps to enable
access and raise awareness. we produce these badges with the aim of helping
On one side the card says: members to explain the nature of their condition
and hopefully gain understanding from the
'The holder of this card is seNsITIve TO ArTIFICIAl lIGHT.
strangers they encounter.
as with any accessibility issue, your understanding and The two different badges are for those who only need
cooperation can make a big difference' to protect themselves from UV light, and thus can
and on the other side: wear see-through masks, and those who have to cover
up completely or at least avoid all bright light.
PleAse be lIGHTAwAre
be willing to switch off artificial lighting They are available from National Office at the cost of
£2.50 each plus £1 for P&P (UK only).
let the holder pass through quickly to minimise exposure
to lighting
Please allow the holder to use your toilet. many toilets are
inaccessible to light sensitive people
listen to the person's needs: people are affected in diverse
ways by different forms of lighting
Please adapt lighting wherever possible to the person's access
requirements
I was amazed at what a difference this made to me and how
people responded much more readily when presented with it.

Eclipse is now hosted at www.lupusuk.org.uk/eclipse
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luPus uK NEWS & VIEWS SUMMER 2019