February is here and four months have passed since we all met in Portugal - time
flies. A lot has happened since our last report and more things are in process.
- Our national conference was held in October 95, and was very successful. All points raised were unanimously agreed upon.
- A lot of new ideas and information were put forward and discussed.
- We are going to make a gymnastics manual for lupus patients, so that they can do a work out program at home or at a gymnasium. It will be ready this Spring.
- Information about the Norwegian Rheumatic Associations (NRF) summer camp. A summer camp has been arranged the last three summer seasons, by the NRF. All members of the NRF can participate. You can come along alone, or bring your family. The holiday lasts for a week.
The mornings start off with swimming in a heated pool, followed by various lectures. Children are looked after by an activity leader and really enjoy themselves. The evenings are spent with different types of social events. New friends and acquaintances are made. Last year, the summer camp proved so popular, that the NRF had to arrange two different weeks. The holiday is payed for by the NRF, so even people with only a small disability pension can participate.
- NRF's deputy leader talked about "REVMA SOL", which is a lovely home that the NRF has bought in Alicante in Spain. NRF have bought the home, to be used as a center for physiotherapy, relaxation etc. for Norwegians with rheumatic diseases. It is a beautiful place, which is also suitable for patients with lupus - at least in the Spring and Autumn. The Norwegian lupus association support the plans for further building of this home.
- The husband of a patient who died of lupus last Autumn, is going to publish his diary, containing over 300 pages, which he wrote about his wife and her disease. A rheumatologist is going to write an introduction to the book. The profits are going to be given to research on lupus. Her husband has also become involved with voluntary work for the lupus association.
- One of our county groups has started a telephone contact line, which so far has proved very positive.
- A research program on collagenose has been started, including 100 lupus patients. Consultant physician is Dr. Gilebo.
- Professor Omdal did a research program for five years at the university in Troms.He is now doing a follow up study of that research, testing among other things brain function, muscle and nerve function. Analysis of these investigations has given added knowledge and understanding about lupus. The follow up study hopes to enlighten us about the following problems.
1) THE BRAIN
- What is the reason why some lupus patients develop changes in the brain.
- What causes the extreme tiredness in lupus patients.
- Can medication help brain function. Different examinations will be used for ex. MIR and SPECT. Questionaires will be filled out. About 20 patients who do not use Prednisone/Prednisolone, will be given 10 mg. daily for two weeks, after which the tests will be repeated.
2) MUSCLES
- Why do so many lupus patients have weak muscles. We know that something happens in the muscles, but we don't know what. The doctors will carry out measurements of the electrical impulses in the muscles (EMG) and in the nerves. Approximately 15 patients will be asked to agree to a muscle biopsy of the thigh.
- A new medicine for prevention of osteoporosis has been registered in Norway. It is called "DIDRONATE" (Bisphosphonate). It is 50% cheaper than "Miacalcic", and has the added effect that it also rebuilds bone matter. Side effects are few. The patient takes 2 tablets daily for 14 days. The following 11 weeks, 500 mg. Calcium daily, then repeats the 14 days with Didronate in cycles. Calcium and Didronate must not be taken together. The treatment may be continued for up to three years.
Norway has the highest rate of osteoporosis in the world. In the south of Norway it has been noted that a lot of elks have osteoporosis. Who knows, perhaps it's because of the acid rain.
- On the 18th November 95, our ninth national lupus group was started in north Trndelag.
- On the 13th of February, our tenth regional group was started in south Trndelag. So, we now have 10 groups, covering 12 of Norway's 19 counties. We are gradually reaching our aim of one group in each county.
- Our next aim is to reach a membership of 500, which will entitle us to have a permanent member on the board of the Norwegian Rheumatic Association.
We have serious plans about writing a loose-leaf handbook for lupus patients. We have discussed that it may be a good idea to have a subscription arrangement for the handbook. As new reseach is published, we can print new articles to update the book, which in that way, will always be actual. Carole Lindsell will write the book and Professor Hans-Jacob Haga will read and comment it, before printing.
- We are also working on a video.
- Professor Hans-Jacob Haga is writing an information leaflet
about lupus, on behalf of the Norwegian Rheumatic Association.
It will be printed in the near future. Professor Haga has asked
Carole to write a chapter about living with lupus.
Well, this is what we have for the moment for "Caring and Sharing".
Linda Knudsen and Carole Lindsell
Norways International Lupus contacts.
E. L. E. F.
European Lupus Erythematosus Federation