Research partner Maria Brusewitz
My name is Maria Brusewitz and I’m 65 years old. I was diagnosed as a rheumatism patient (RA) 1979. I’m also a Physiotherapist. Having a disease that concerns joints as well as the muscular system and being a physiotherapist is an advantage as I for instance know quite well which pain I shall respect and which I shall challenge. I know a lot more about my own illness than the average patient and I think that this have had a good effect on the outcome of my illness. When the opportunity opened to be a research partner I volunteered immediately.
In my experience there is a huge gap between what the profession understands at a certain point of disease and what a patient can understand or accept. I wanted to be a bridge between the RA-profession and the RA-patients and so far I think that it worked out just like that.
As a research partner to be I was invited to a join a training period and after that, I meet a group of researchers in Uppsala, but soon found out that their project was of such a specialised molecular nature that I did not have a lot to contribute (they were analysing a blood component vital for developing SLE). Then I was invited to join Professor Christina Opava‘s project: LONG-TERM PHYSICAL ACTIVITY IN RHEUMATOID ARTHRITIS. That is an area I’m very much interested in. My role in the project, I think, can consist of giving feed-back to the researchers concerning any form of addressing patients and on the whole I will try to give a patient’s view on every stage in the process.
I’m very excited about this project and my role in it. The researchers have been very forthcoming and I do feel that I will be useful to them. The next step in this project, that I will be part of, is that the training program is going to be designed in detail. I think I will have a lot of opinions about that, for example: how hard, how often and what kind of support can the patients expect. Then there are various forms of information to the patients to be formulated and a lot of other things that I will consider from my patient’s point of view.