EUROPEAN LUPUS
ERYTHEMATOSUS FEDERATION
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Official Addresses and further information
about ELEF and the members of ELEF,
the
national organisations of Lupus Groups in
The magazine of ELEF is published annually in December. It contains medical and other reports, general information and contact detail regarding ELEF and annual reports submitted by the national member groups.
The Broadsheet is a concise publication distributed in April and October with emphasis on news and brevity.
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WHAT IS
LUPUS?
So few have heard of it,
yet worldwide it's seen as more common than leukaemia muscular dystrophy and
multiple sclerosis. 90% of the patients who suffer from Lupus are female of
childbearing age. Even young children can be affected by lupus.
Lupus is a condition
whereby the body's defence mechanism goes into overdrive and starts to attack
itself. The symptoms are many and varied, and the illness often seems to mimic
other diseases. This gives rise to difficulty in diagnosis and the condition can
be overlooked, sometimes for years, unless the General Practioner or consultant
is alert to the possibility of lupus.
LUPUS IS NOT
CONTAGIOUS
Lupus can be triggered
|
- at
puberty |
- during
the menopause |
|
- after
childbirth |
- after
viral infection |
|
- through
sunlight |
- as a
result of trauma |
|
- after a
prolonged course of certain medication |
|
THE SYMPTOMS
These may include
|
- extreme
fatigue |
- joint and
muscle pain |
|
- eye
problems |
-
depression |
|
- mouth
ulcers |
- facial
or other rashes |
|
- hair
loss |
- anaemia |
|
- and
possible involvement of the kidneys, heart, lungs and brain |
|
|
-
miscarriage (especially regarding Hughes Syndrome) |
|
THERE IS NO CURE...
People diagnosed normally
remain in medical care, with continuing medication. Many symptoms have less
impact as a result, but side effects often occur.
Lupus adversely influences the
lives of sufferers, the family and their friends.
SLE - systemic lupus erythematosus
....hard to say - harder to live
with....
History of
ELEF
A meeting took place in London Belgium ,
Finland ,
France ,
Germany ,
Ireland ,
the Netherlands ,
Switzerland ,
and United
Kingdom
The idea of this meeting
was to get to know each other, to exchange experiences, and to learn from each
other.
Everybody present agreed to
meet again the following year in Leuven/Belgium and it was there in 1989 that
it was decided to found the European Lupus Erythematosus Federation -ELEF-.
The members
of ELEF are the national organisations and other properly-accredited Lupus
Groups in
The aims of the ELEF you may read on the following
text. According to these aims ELEF in 1990 became one of the NGO's
-non-governmental organisation- who advised the European Union in the field of
disability.
In 1991 ELEF made a
Europeanwide survey on the disease of Lupus. The First International Lupus
Patients Conference in 1992 which took place concurrently with the Third
International Scientific Conference on SLE was organised by ELEF.
The Trustees of ELEF were
centrally involved in the promulgation of World Lupus Day on May 10, 2004 in
ELEF has worked ongoingly
to encourage Lupus Groups internationally to recognise October as Lupus
Awareness Month every year.
There are contacts
worldwide with other Lupus Organisations. A newsletter is published once a year.
ELEF CONVENTIONS
1989 |
Leuven;
Belgium |
1999 |
|
1990 |
|
2000 |
|
1991 |
|
2001 |
|
1992 |
|
2002 |
|
1993 |
|
2003 |
|
1994 |
|
2005 |
|
1995 |
|
2006 |
Bergen,
Norway |
1996 |
|
2007 |
Mainz, Germany |
1997 |
|
|
Madrid, Spain |
1998 |
|
|
|
[Back to survey]
Aims of
ELEF
To collect information on all aspects of Lupus,
both in the medical and sociological areas of the disease.
To assist in improving the knowledge of the
disease for people with Lupus and members of the health, welfare and medical
professions.
To encourage and/or undertake surveys and
research projects related to the disease, and the publication of the useful
results of any such research.
To promote awareness of the disease throughout
To sponsor and/or promote European symposia on
all aspects of Lupus.
To gain representation on any European or
International body whose interests could be of benefit to members of the
European Lupus Erythematosus Federation.
To assist with the establishment of Groups in
other European countries where at present they do not exist.
To do all such other lawful actions as are
necessary for the attainment of the above objects.
ELEF
European Lupus
Erythematosus Federation
elef@rheumanet.org
February 2008