In many countries there is a patient organisation for Spondyloarthritis sufferers. In Switzerland the Swiss axSpA Assocation (Schweizerische Vereinigung Morbus Bechterew SVMB) publishes a quarterly magazine with useful information and a focus theme. Recognising that regular exercise is crucial to containing Spondyloarthritis, it organises regional exercise courses and has an excellent online platform with exercises.
It took 30 years to discover that I had axial spondyloarthritis. That’s above average, but diagnosis still takes about 6-7 years in Switzerland – down from 9 years until recently. Maybe if I’d known about this test (in German or in French), also available from the Swiss axSpA Assocation I would have found out earlier.
I am also a member of the Spondylitis Association of America (SAA). Their vision is to see a world free of the pain and disability of axSpA and their mission is to be a leader in the search for a cure. Therefore the organisation is strongly focused on research and supporting patients in their disease management. There is a patient forum, where sufferers can exchange experiences and ideas, and regular invitations to participate in research. There are also seminars and webinars in which the latest research is explained in language that is easy for patients to understand, e.g. about the role of the microbiome. Patients are strongly encouraged to active engage both with their doctors and with other patients. There is a strong feeling of community.
Both national associations are members of the Axial Spondyloarthritis international federation ASIF, which supports national clubs through out the world. On their website you can find out if your country has an association.
It is impressive how patients have organised themselves throughout the world and I encourage everybody suffering from a chronic disorder to find and join a patient association, if they can.