The topics on the first day are:
On the second day, the participants are divided into three groups, according to which type of disease they represent - Sjgren Syndrome, Sclerodermia or Lupus. Regarding the Lupus session the program is:
The courses take place from monday morning until friday lunch. The patients live at the hospital and are encouraged to bring a near relative with them. The course is free of charge for patients and includes full board. The relative pays NOK 90,- approx. 12 ECU per day. The days start with swimming in the heated pool and continue with lectures by doctors, psychologists, physiotherapists etc. Group discussions and activities are also included.
Professer Hans-Jacob Haga has written his book about SLE. I have written a few pages about living with Lupus in his book, which is in the print now.
Jan Petter Korsedal lost his wife, Birgit Marie last year. She was a nurse and died of SLE. He has written a book about her fight against the disease. The book is in the print and all royalties are to be given to our SLE Research Fund.
Both books will be advertised in various ways. We believe that they will give us much needed added publicity.
This is a very sore point! We have written to lots of drug companies, other firms and an advertising company, but to no avail.
We have now contacted the Norwegian Football Pools regarding support and are awaiting their reply.
We are pleased to note that our increase in membership is approx. 70 people. From 300 last year to approx. 370 this year.
We feel that information is of extreme importance for Lupus patients. Added knowledge gives greater security. However, very little information about SLE is written in the Norwegian language. I do a great deal of work translating articles from English to Norwegian to avail this dilemma. Everything has had to be handwritten by me and sent to Nina and Linda for printing on their computers. We decided therefore to build up a computer fund.
I made dozens of patchwork easter chickens which Linda, Nina and I sold. The money from the sale of the chickens was then invested in some paintings and bracelets which we are in the process of selling. Some friends kindly payed much more for the chickens than the asking price and the fund rocketed up to 6000 NOK (approx. 767 ecu).
I wrote to the NRF and asked for help regarding the computer fund. They have kindly promised to give me a second hand computer in September. We have used part of the fund to buy a modem and a zip-drive, which will enable us to enter cyberspace, draw articles about Lupus from INTERNET and send E-Mail.
Various members have sold lottery tickets for the NRF. The percentage of this sale was partly used to buy a printer for the computer.
The Lupus Working Group has decided to make folders containing 10 of the articles that have been translated, on a subscription basis. When someone subscribes to the folder, they receive a further 10 - 12 articles in the space of one year. Further subscriptions can be made to ensure that all the medical articles are up to date. We are planning this project at the moment.
Sylvi Marie Dahlberg, who is a gymnastics instructor, has made a wonderful program for patients with Rheumatic diseases. She has Lupus herself. She has made an instruction leaflet with matchstick drawings showing how to carry out the exercises. She also found 14 well known melodies to suit the exercises for the accompanying tape. Unfortunately, when the melodies were to be recorded, she was informed that she would have to pay 54.000 NOK (6.750 ecu) in taxes for use of the melodies. The whole project looked as though it would fall through. I then came upon the idea that my husband, who is a musician, could compose 14 melodies together with two friends who are musicians. The result is fabulous!! The tape was recorded in the Olympic Studio on August 16th 1996. The profits from the sale are going to be divided 50 % to Sylvi, 25 % to NRF and 25 % to Lupus. If we can raise the funds, Sylvi would like to make a video of the exercise program. We are sure that this would be a good sales article for all of you, so please let us know if this project could be of interest for you! I would willingly translate the program.
The number of groups is gradually increasing! We now have 10 groups in 12 Norways 19 counties. All the 19 counties have a Contact-person who can be contacted for advice.
Carole Lindsell
E. L. E. F.
European Lupus Erythematosus Federation