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SclerodermaJune 2013
magazine of the Scleroderma Society
Get YourGloves On!
2013
news
welcome
getyourgloveson.org
Richard Dodds
Contact us... Telephone: 020 7000 1925
Mail: The Scleroderma Society
Bride House, 18-20 Bride Lane
London EC4Y 8EE
Email: [email protected]
Scleroderma News
Richard
society news
Conference - Final Reminder
Get Your Gloves On! 2013
Survey
FESCA AGM
The Brian Norris
Appeal
Belper Games
Joint work with the
Raynauds & Scleroderma
recently met to discuss ways in which
the Society and the RSA could work
more closely together to
improve the support and
to all of our members and
non-members over the
next years. We are
currently looking at plans
to collaborate on a number
Keep an eye out for further
Want to join or start a
local group?
“our aim is to become the support group for people with scleroderma”
hair or shaving for a year! Whatever ideas you have we can help. Just get in touch and
Kevin Morton
Vikki Roberts
Jennifer Zielinska
why w
e fu
ndra
ise
themselves through all sorts of pain in
order to raise funds for us. Huge
In Memoriam
fundraisingHeroes
Fundraising or hair-raising?
“
“
or hair raising???
No
Yes
FINGERS AND HANDS
No
Yes
FACE
No
Yes
MOUTH
No
Yes
TEETH
No
Yes
EYES
No
Yes
NECK (SWALLOWING)
No
Yes
STOMACH (INDIGESTION & REFLUX)
No
Yes
BOWEL /ANUS
Our survey said...
Fingers and hands
The Face
scleroderma strikes at the
heart of who you are
No
say
Yes
No
say
Yes
No
say
Yes
No
say
Yes
HAS YOUR ABILITY TO WORK BEEN AFFECTED?
Economically
active
Not
economically
activesay
Female
Male
GENDERAge Range
Under 12 months
1 to 2 years
Over 10 years
2 to 3 years
Still seeking
diagnosis
DIAGNOSED FOR..
Get YourGloves On!
June 29InternationalScleroderma Day Swiss artist Paul Klee died in 1940 of scleroderma, which strongly influe
. Scleroderma is the name given to a group of rare
d vessels, and internal orga
Lunch in your gloves!
Organise a fundraising lunch
Put up a poster Upload your pictures
Get Your Gloves On!on the 28th June 2013
for people with Scleroderma
Activ
ity P
ack
organising a gloves based fundraising event. We are here to help you out so
if there is anything you need that we have not already sent you please get in
a much bigger group both in the UK and overseas. But it is
all down to individuals and what you do - many thanks in
advance.
Get Your Gloves On!for people with scleroderma
29th June 2013
sclerodermaaustralia.com.au for more information
getyourgloveson.org
The epidemiology of systemic sclerosis or
‘who gets scleroderma?’
SCLERODERMA –
THE SEARCH FOR
THE CAUSE
Coming Up
Jake sets his sights on a
We are very grateful.
P.S.
morphoearesearch
Tonia Moore and Graham
Dinsdale at the back, Andrea
Andrea Murray outlines
recent Scleroderma Society
funded research being carried
out in Manchester
faSScinate
local contacts noticeboard
Bedfordshire
East Anglia
East Sussex
East Yorkshire
Hampshire
Lancashire and West Yorkshire
Merseyside
East Midlands
North Wales
Oxfordshire & Berkshire
Mid Wales & Shropshire
Scotland
South London
South Wales
Surrey
West Sussex
Wiltshire and North Hampshire
We are looking for scleroderma champions. Would you like to be one? It can involve
someone with scleroderma in your county. We are hoping to build a small group of
scleroderma champions who can help us spread the word throughout the country. We
Become a Scleroderma Society Champion
Remember to sign
up for this years
Wear Your Gloves
Mike Rich
Amy Barrick
Trustees
Kim Fligelstone
Richard Dodds
Steve Holloway
Susie Hoare
Helena Rozga
Events Calendar
Helpline
Nurse Specialist Advice Lines
Liverpool
Aintree University Hospital
Bath
Belfast
Ulster Hospital
Dundee
Ninewells Hospital
Leeds
Chapel Allerton Hospital
London
Royal Free Hospital
Scleroderma queries:
Pulmonary hypertension queries:
London
Royal Brompton Hospital
Manchester
Hope Hospital
Newcastle
Freeman Hospital
Scleroderma queries:
Pulmonary hypertension queries:
Queen Alexandra Hospital
Contacts
www.sclerodermasociety.org.uk
020 7000 1925
