1. National Level
Membership
The Swiss Lupus Group will celebrate ist 10th anniversary in 1997. The number of its members is constantly increasing, but better public presence must always be one of the group's main activities. Lupus must be known by people.
At the Annual Meeting in March 1996 there was a talk about the ELEF meeting in Lisbon, given by the international delegate. SLEV members liked the slides show very much and there were many positive reactions to this international contact.
At the same meeting SLEV members decided to become an independant association, which means that from 1997 SLEV will have its own constitution, feel more free in its decisions and financial matters. As one of the three independant self help groups accepted by the Swiss League Against Rheumatism (the others are the Polyarthritis and the Morbus Bechterew), the Lupus Group will get some financial help from there.
Medical talks are three times a year:
- 8th June 1996 St. Gallen "New Aspects in Diagnosis and
Therapy"
Dr. Ch. Herzog
- 21st September 1996 Zurich "Prevention of Osteoporosis in SLE"
Dr. J. Müller
- 16th November 1996 Lucerne "Lupus and Pregnancy"
Dr. Th. Stoll
"Lupus and Longterm Treatment with
Cortisol"
Dr. U. Schlumpf
These medical talks with the opportunity to ask questions are well attended. Lupus patients feel more free to ask things they would not ask while seeing their doctor. They feel the group's understanding and protection.
The committee is responsible for the four editions every year. Reports are written by patients, which is contrary to most of the other European (and American) newsletters. There are lupus biographies, reports of regional activities and all the medical talks are summarized by a patient. There are no articles about medication and scientific matters. There is also a detailed report of the annual ELEF meeting. It is central for SLEV to realize the idea of self help on all levels which includes the newsletter.
SLEV is still much dependant on private contributions. There are no firms or public authorities which support SLEV with money. Member fees do not give a safe financial basis, as income and expenditure are not balanced. Since 1995 there are more and more donations after cases of death. The SLEV umbrella is sold with success and thus contributes not only to get lupus more known in public, but to finance some of the activities of SLEV.
This year SLEV offered a professional training to all the regional leaders under the title "What is self help?". There was instruction on subjects like:
- How do I lead a group?
- How do I react to newcomers on the phone?
- What do I do with problems between/amongst group members?
The psychologist could give many hints and it was a well received and successfull event!
French Speaking Lupus Patients
During this year SLEV could see that a slowly growing french speaking group is trying to get organized. So far there were four regional groups in the German speaking part and up to now SLEV only has a newsletter edited in German. But the Swiss French speaking group is regularly receiving the newsletter of Lupus France. As soon as there will be enough people in this new regional group, SLEV will have to integrate it on a national level; not an easy task, due to the language problem of newsletters and medical talks. But SLEV is by no means the only Swiss organization with these problems!
The regional group of Basle is especially active in happenings together with other self help groups. Its experiences are very positive, as these groups do all kinds of activities together, very much supported by the "Centre of Selfhelp". Basle is up to this moment the only town in Switzerland which has a public financial support for this centre called "Hinterhuus" ("The house in the backyard"). One example of this year's activity; all the self help groups knotted a net which was then put up at a public building and thus attracted many people. Public discussion about selhelp was initiated and radio and newspapers reported widely on the event. The name "lupus erythematosus" was mentioned very often and thus received free publicity. This kind of network activity is very recommendable, as all selhelp groups have similar aims and also problems.
Let me end with this thought of working together; ELEF is a network for lupus patients and I wish its meeting here in Pisa will be constructive and successfull!
Kathrin Gerber-Wirz
International Delegate SLEV
E. L. E. F.
European Lupus Erythematosus Federation