Slovenia: The painful truth of rheumatoid arthritis through the lens of a young local artist
In rheumatoid arthritis (RA), the body’s immune system attacks the joints, causing them to become inflamed and swollen. This is very painful and means that people with RA can become increasingly disabled, which is why it is important to start treating the disease as early as possible once it is diagnosed. In treating RA, the goal is to control this inflammation, relieve pain and prevent the joints from becoming damaged.
Different countries have different procedures when it comes to how these treatments are financed. Delayed or limited national reimbursement schemes could mean patients cannot receive the treatment they need. To address this, Professor Matija Tomšič, a rheumatologist from the University Medical Centre Ljubljana, initiated a creative project.
A picture says more than a thousand words
Together, the University Medical Centre and Roche Slovenia worked with a local artist to raise awareness around importance of access to RA treatments in this country, particularly the challenges with reimbursement. A picture says more than a thousand words, so their mission was to visualise the burden of RA, emphasising the importance of national support for people suffering from this debilitating disease.
Manja Zore, a young Slovenian photographer, captured what it means to live with the consequences of rheumatoid arthritis. The photographs depict the irreversible deformity of even the smallest joints and how it strips people with RA of the ability to perform everyday tasks.
Zore’s photography exhibition ‘The Art of Living with rheumatic diseases’ gives a glimpse into the real-life stories of people with RA and the need for change.
The exhibition made its premiere in Slovenian National Assembly and was subsequently exhibited in one of the biggest shopping centers of Ljubljana afterwards. Together with patients and rheumatologists the stories were also presented to the EU Parliament in Brussels. The series of photos won Best Photographic Reportage in the main Slovenian juried photography competition, Emzin Photo of the Year. It has since been presented at the RA Priorities event at the EU Parliament in Brussels, Belgium in 2011.
Dominika, a young piano player featured in the exhibition, was diagnosed when she was 23 years old and will never forget how she felt when the pain diminished once she started treatment. Having regained her ability to play the piano, she performed at the opening ceremony of the photography exhibition.
Suddenly you can jump to the ceiling, everything is featherlight, as if you’re a super-person, when in fact you have become healthy again.
With the project getting national attention, rheumatic diseases became one of the most discussed healthcare issues in the Slovenian media. It also supported important decisions made by the government to change reimbursement procedures and optimise treatment standards of RA. Today people in Slovenia suffering from RA are better able to receive the treatment they need to manage their disease.