Page 39 - N&V Winter 2019

ELEF TO LE 30 YEARS ON

30 Years ago, on may 26, 1989, luPus many projects established by ELEF/LUPUS medics dedicated to easing the debilitating
eurOPe’s Constitution (then under the EUROPE, with the two major ones, from my effects of lupus so enabling their patients
name of eleF) was signed. As the 30th point of view, being The Common Cause to live happier and more comfortable lives.
Anniversary is celebrated, former luPus and Unmasking Lupus. However, the greatest joy has come from
uK representative to eleF and Chair of Both of these projects brought member meeting many, many people who live day-
luPus eurOPe, Yvonne Norton reflects... by-day with lupus (in all its forms), who
countries together in two unique ways, one
26th May 1989, certainly a date to investigating the major problems caused by smile and put on a cheerful exterior (while
remember – the birth of ELEF – European lupus as experienced by patients and the silently screaming with the pain they are
Lupus Erythematosus Federation with the other demonstrating the effects of lupus feeling) to help others cope with their lupus
motto “Uniting People with Lupus throughout depicted through art, such as painting, and know they are not alone, whether they
Europe”. poetry, story-telling and photography. are in the same village, the same town or
September 2008, during the Convention in “Uniting People with Lupus throughout the same country…
Palma de Mallorca when I was elected Europe”. Today, 30 years later, LUPUS EUROPE is
Chair, Council agreed to a name-change – With Peter, my husband and former still “Uniting People with Lupus throughout
ELEF became LUPUS EUROPE. The motto Treasurer of ELEF/LUPUS EUROPE, I have Europe”.
remained “Uniting People with Lupus had the opportunity to travel throughout Yvonne Norton
throughout Europe”. Europe to attend many conventions and Chair 2008 - 2012
Over the years, I have been involved in conferences and the honour of meeting

IN MEMORY OF SUE

It was with deep sadness that, during May, such as EULAR, established the LUPUS UK application which gave RNHRD the award
I heard the news of the death of Sister Sue Nurses network, contributed to the range of of LUPUS UK Centre of Excellence. Her
Brown MBE, Nurse Consultant in tremendous knowledge of lupus and its
Connective Tissue Diseases at the Royal allied illnesses, along with her empathy
National Hospital for Rheumatic Diseases, with patients and her teaching skills
Bath (RNHRD,The Mins). combined to give Sue respect from
everyone who came in contact with her.
I knew Sue for many years. Also a West
Midlands Girl, coming from Walsall, not Being awarded the MBE for Services to
far from my home, we would both lapse Nursing in the Queen’s Birthday Honours,
into the Black Country dialect when we 2017, was official recognition of Sue’s
met up. I remember one occasion when we dedication to her work.
were sitting together at a post-conference All who knew Sue, whether as a friend,
dinner in Madrid when a delegate from colleague or nurse, will remember her with
The Netherlands asked why we were affection and with gratitude for the role she
speaking a foreign language when we played in providing education, support and
were both from the UK! care for people with lupus. Thank you, Sue.
LUPUS UK Factsheets and booklets and, not
Sue was very well-known within the Lupus long before she had to take early medical Yvonne Norton
World, she spoke at major conferences retirement, she headed the successful Vice-Chair & Trustee

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We hope the following will assist:
Freedom Travel* 01223 454290 Go Travel Insurance Services 0870 152 5840 Staysure 0800 054 2226
Orbis Services 0845 338 1638 Club Direct Travel Insurance 0800 083 2466 World First Travel Insurance 0345 90 80161
AllClear Insurance Services 0845 250 5250 It’s So Easy Travel Insurance 0844 357 1315 The Insurance Surgery* 0800 083 2829
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Able2Travel 0845 839 9345 Saga Travel Insurance 0800 015 8055
Please bear in mind the above companies may not always be able to offer travel insurance.
This will depend on the answers given when medical screening is undertaken.
*These companies offer a donation to LUPUS UK when a policy is taken - When enquiring please quote LUPUS UK
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luPus uK NEWS & VIEWS SUMMER 2019