The totalitarian system in former communist countries limited the activities of people and lead to their passive role in society. The individuality of people was suppressed and a paternalistic approach to patients lead to certain dehumanisation of public health care.
The velvet revolution in the Czech Republic in the year 1989 changed not only the political and economical system, but also brought new possibilities in health care. Among many other things it lead to emergence of patient self-help societies. The initiative came from both rheumatologists and enthusiastic patients. One of these societies was ankylosing spondylitis (AS) self-help society – Club of AS Sufferers, founded in the year 1990.
One of the main goals of the Club was patient education. An information newsletter has been published regularly bringing articles on all aspects of AS. Later, an audio-cassette with home exercise was released and a guidebook for patients was published and circulated among members. After an enthusiastic beginning was more and more apparent that the goals of the Club would be more difficult to achieve than expected. There is some inertia in the people’s attitudes to life and it is difficult to bring new models of behaviour into reality: the responsibility of every individual for his or her life including health matters and active role in disease management. These problems are a burden for foundation of vast number of self-help groups at district level.
The prosperity of modern society is based on very effective economic system, which makes great demands on people. Some rheumatic diseases, like AS, are chronic and begin at young age. Mainly for these patients it is difficult to face all problems imposed from both the disease and life, especially employment. The negative perception of society can be difficult problem to overcome, misconceptions sometimes held by employers can bring problems in a job. The public awareness of rheumatic diseases is rather poor, the opinions, like arthritis is a disease of old age, still prevail.
To change the situation it will be necessary to inform the society about these problems. We feel that this will be one of our new goals in the future, but this goal is beyond the possibilities of an individual self-help society like Club of AS Sufferes. The solution may be in a national and, possibly, international cooperation among all organisations of rheumatologists, health professionals and patients. Only such a partnership can initiate a campaign for solving these problems. The European Manifesto or the Bone and Joint Decade 2000–2010 can be a good starting point for, probably long term, effort to improve the quality of life for people with rheumatic diseases.
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