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PROFILE
NICOLA CLOUD
EN
How a rare illne
ss changed a life
N
icola Clouden is allergic to water.
and that’s when I was asked to be bran
ch
reduce her pain considerably. Now,
That’s the best way of describing
when
secretary for a new branch, Bucks Cou
nty.
she has a bath, the pain can last anyt
her condition, anyway: known as
hing
So now I have a working knowledg
e of what
from five minutes to half an hour –
‘aquagenic pruritus’, it’s a rare
befo
re,
peop
le feel like when
autoimmune disease that
it would last for eight hours straight.
they
’re
bulli
ed,
and I try to
means that if her skin
“When I tell this story, it’s to encourag
e
help them not go through
gets wet, she gets hot
blood donors,” she said. “A lot of peop
le
the same.”
or she drinks water, she
think a blood transfusion can save
a life,
Eighteen months ago,
suffers agonising pain.
but it can also change a life.”
Nico
la
also
became an
The condition, which
Her support for the hospital involved
accredited rep and now
affects a mere one in five
her recently giving a speech at the
official
travels to different
million people, means
opening of their NHS Blood and
work
places to help
that she can only take
Transplant’s Therapeutic Apheresis
members. “I have my
a bath every few weeks
Services Unit. “It was scary, but the
own cake business
– steeling herself to do so
Congress speech course I went on
last
now, so I can juggle
KEEPING DRY
– and finds it impossible to
year helped,” she said. “I also made
the
my
Nico
health issues
la is effectively
go out in the rain, so she has
corporate cake and they said it was
the
‘alle
rgic
arou
’
to
wate
nd
my
r.
work
to carry an enormous coat
best they have ever had!”
issues,” she said. “Being
all year round to protect herself agai
nst
self-employed gives me the ability to
sudden downpours.
support a lot more members.”
On top of all this, in 2012 Nicola brok
e her
Nicola was bullied at work because
of her
back in a car crash and needed to have
spinal
back injuries and also because of her
skin
surgery. It was around this point that
she
condition, with her employers mak
ing it
w.nhsbt.
started experiencing bullying at work
, and
For more details, go to ww and
difficult for her to arrange to have spec
.uk
needed the help of GMB.
ial
.co
od
blo
w.
nhs.uk, ww
plasma transfusions to help with the
.
pain.
“When I broke my back I was discrimin
www.organdonation
ated
The good news is that these experime
ntal
against and pushed out of my job,”
nhs.uk
she said.
transfusions, which she has regularly
at the
“My GMB officer helped and I fought
my case,
John Radcliffe Hospital in Oxford, have
helped
MORE
INFORMATION
www.gmb.org.uk 25
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