When I was asked to write this introduction for this conference on the very recent Lupus Self-help group in Iceland I was not at all sure what to say. First I want to introduce myself. My name is Sigridur Gunnarsdóttir and I am an International telephone operator. I was brought up in a family of connective tissue diseases, so this problem is not new to me. My mother and and two of my aunts and an uncle have been diagnosed as having Lupus, besides many other relatives and I believe this family is something quite exceptional and we have shed many drops of blood for science these past decades. In 1954 my sister, who was one year older than I , began to complain about headaches and joint pains. The doctors were baffled and did not know what the problem was and one admitted her to the hospital saying that there was nothing wrong with this girl but the mother had some trouble! For two years she was ill and finally died from kidney failure in 1956, at the age of 11, but by then the doctors had diagnosed this as Lupus. Therefore I am interested in this self-help group even though my disease is not at all that clear-cut, which has been rather difficult for me, even though the group of mixed connective tissue diseases is about as big as the one with Lupus. It would have been more convenient to know exactly what to name my condidtion.
After many years with all kinds of difficulties I joined the League against Rheumatism in Iceland and became a member of the board of administration and I have very much enjoyed working with all the wonderful people that I have come to know there and my problems sometimes seemed smaller compared with what others had to endure. As time passed I realised that the responsibility for my health was mine and I could not expect someone else to do that for me. I found out that I needed someone to talk to, someone who understood what I was feeling and could help me and who I could perhaps also help. My friend Laufey, who I met sometimes during blood-tests or at the hospital, was thinking along these lines too and finally we decided to make this dream come true. She called me and several others and we met one evening in November 1993. We were all women from the age of thirty and were all experienced patients. Many of us had the same doctor and some were related and now I must not forget to tell you the the entire population of Iceland is about 260.000 . I know that you cannot possibly grasp this smallness of a whole nation, just as we cannot really understand millions of people, but this is both good and bad. The positive side is the closeness, we know our relatives and all researches are more complete but the negative side is lack of funds. We are lucky to have many good scientists and interesting researches are being done right now which you will hear about in the near future. Part of this has already been published and we brought an article with us here.
So, we met a few times and what a relief it was to express your feelings to someone who understood, we talked for hours each time about everything, even feelings we had never even tried to talk about before, the frustrations, the rage, the problems faced with every day, the medications, the side effects, and the fatigue, oh, the fatigue!
Finally on 24th of May 1994 we were ready to have our first meeting. We advertised in local papers and got a doctor, Helgi Jónsson, who is a specialist in Lupus, to give a talk. This first meeting was a huge succes, over 70 people came and became members of this division of the League Against Rheumatism, and this was a good part of all Lupus patients, as the are only about 130 in the whole country. We baked and gave refreshments and it was a happy group, although exhausted, that fell into bed that evening.
Since then we have had three big meetings where doctors have given talks on several sides of this strange and complicated disease, Genes and Lupus, Sleep disorders and depression, the Immune system and side effects of drugs and so on. Now we sell refreshments and save money for a Video-tape on coping. We meet once in a while just to see each other and have a good time and we have tried to have "open house" without much success, this being a new concept talking about oneself and one's disease, but we don't know the meaning of giving up and we will succeed on this eventually ! For example we asked people to write down their names if the wanted to take part in some activity, like phone-help, smaller group meetings and such and later we sent letters, asking them to come and plan some self-help and only one showed up! But perhaps we will learn something from you here that we could try next time with better results.
This lady here has had a wonderful life, not easy but challenging and fulfilling. Having my childhood experience I really appreciate the gift of life and chance of a normal family and career. I have the incredible number of three children, which seem to have inherited some form of the family disease, but I know they will face that with courage and optimism, this only being one aspect of life and having so many others to consider. It never entered my mind not having children and now my oldest, named Karitas (which is the Latin word for love) after my sister, is expecting my first grandchildren (yes, two) and the scientists will get two more to prod and examine.
E. L. E. F.
European Lupus Erythematosus Federation