In November members from our national organization "SLE-gruppen" gathered in Stockholm for a two full days conference of interesting talks, exchange of experience, group work for future plans and also a pleasant time together. Below our member and editor of our news bulletin "SLE-Bulletinen" Barbro Weatherill will give you a glimpse of what happened.
It started with Barbro reporting from a conference in Washington DC with the American Lupus Foundation. They have been very successful with their marketing work of the LFA. From Mhnster in Germany and the ELEF conference earlier in November, I reported about the efforts made and challenges the Lupus organizations in the different European countries meet.
Representatives from the SLE school team from the university hospital of Karolinska sjukhuset in Stockholm told us that patients schools have existed since the 1970-s. Lupus patients however, had to wait much longer for their courses to start because of the difference and variation in symptoms between patients.
The aim of the SLE-course is to give the patients:
Each group only consists of 5-7 patients. Light physical training for example in a heated up swimming pool is nowadays recommended to lupus patients. During the course, which usually lasts for two weeks, the occupational therapist gives information of possible adaptations to make life easier at home and at work and other means of aid and assistance from the local authorities. The hospital social worker leads group discussions about things like crisis reactions and experiences and how to go on working with this. They also discuss the psycho-social consequences of SLE. Towards the end of the course the patients can put questions to a medical doctor and take up issues that feel important.
From the Karolinska hospital came also Doctor Ingrid Lundberg and told us about new methods in science and topics of lupus. She talked about new possibilities of grading different patient tests made in hospital. How do we measure inflammation or the degree of desease activity? New systems of grading in order to compare symptoms and laboratory results from time to time are being tried out. So are comparisons between different countries.
Other subjects Dr Lundberg brought up were different X-ray methods, and cameras, and at last our always repeated subject: the sun. The latest known news of UVA- respectively UVB-light and their impact on the skin is always important to understand for lupus patients.
The next morning an actress fron the National Dramatic Theatre School talked - and performed - body language contra verbal presentation. These two sometimes express totally different things. It certainly was very comical and informing to see what words mean - and don't mean - in connection with our body language. Talking to an audience gets easier if we use different techniques, which we can learn, but the personal engagement in our subject is more important for letting the audience have our message.
After the conference was finished, these were some of Barbro's reflections:
In many places in our country lupus patients meet in a more or less organized way. Many of us wonder how we would have felt today, if our SLE organisation would not have existed?
We believe the answer is, much worse or even really bad. I would not receive the information I need nor answers to my questions. (Without information I would not have been able to ask the questions.) I would not have friends who understand how I feel. I would surely have been frightened of all that happens to my body, and think I was on my own.
A conference can be very tiring, but still is like a vitamin injection. I can have a pleasant time with "healthy" people, but aches and pains and other problems are always there as a reminder - though it does not show.
Therefore recognition of my handicap, relaxation and being understood 100 percent is so valuable. To be a lupus patient among others gives a sense of belonging and an identity which in its turn gives a feeling of security in life. A security, you may well call health care!
Many regards from SLE-gruppen in Sweden
through
Monica Fishman
E. L. E. F.
European Lupus Erythematosus Federation