'I am not giving up on myself.'
Last updated: 15th March 2023
Mirjana first started getting MS symptoms in 1999 but was not diagnosed until 2008. Twelve years later she has still not been prescribed treatment and her condition has worsened to the extent that she needs to use a wheelchair for journeys outside her home. Her situation is very different to that of her boyfriend, Andrej; he also has MS but as an American citizen has been on medication from the day he was diagnosed.
As far as Mirjana is concerned, she has been continually failed by Serbia’s medical system for more than two decades. At the time she was diagnosed her neurologist advised that because she was able to perform daily tasks with no problem and walking without aid her MS was a benign type that didn’t need medication. Furthermore, he advised her that medication had destructive side effects that would actually make her worse. “We are brought up to believe our medics and trust they are acting in our best interests,” says Mirjana, “but now I think he was lying to me because he wanted someone else to get the medication.”
Mirjana believes she has been a victim of Serbia’s lack of supplies, a situation which means just 12% of those diagnosed with MS have access to treatment. “You are told you are too young and too healthy, then you are told you are not young enough and not healthy enough. There is always an excuse.” Although she was initially told her MS was benign, a term that is sometimes used to describe a very mild form of relapsing-remitting MS, Mirjana was in fact an in-patient every year between 2008 and 2016. At no point were disease-modifying treatments presented as an option to her.
The only drug she ever received was corticosteroid treatment. Four years ago a reaction to the steroid treatment resulted in 10 days in hospital, including three days in a coma. Following this, she needed to use a wheelchair and had to give up her much-loved job as a music teacher. In January 2020 she was diagnosed with non-active secondary progressive MS and once again told she was ineligible for treatment.
Her experience could not be more different to her boyfriend’s who is an American citizen and was diagnosed while living in America. From the day he was diagnosed he has been receiving treatments and over the years has switched medication to find the one that presents the least side effects.
Mirjana takes medication for depression, anxiety and bladder control. But Mirjana hasn’t given up on the chance of getting disease-modifying therapy and still believes her condition is reversible: “I can still walk with a walker, I don’t always need a wheelchair. I think that some DMT would help me to improve my walking and be more independent. All my functions are here. I don’t need help to get dressed, I can cook, I can wash, I can do anything. I’m not in bad shape. I am going to continue fighting, I will try to find an international doctor. I am not giving up on myself.”