Ivan Petrusic is a nursing specialist, student, travel fan - and Myasthenia Gravis sufferer.
“That’s it, now you’ve had a stroke,” thought Ivan Petrusic that morning in 2010 when he was suddenly unable to move properly. As a care professional, he knew the symptoms only too well: weakened arms and legs, slurred speech and a change in facial expressions – it had to be a stroke. This was also initially assumed in the emergency ward at the USZ. However, the suspicion was not confirmed. It was only many examinations later that the specialists at the USZ Eye Clinic made the correct diagnosis. To confirm this, they injected Ivan Petrusic with a specific medication and within a few minutes all his symptoms had disappeared. This confirmed that Ivan Petrusic has myasthenia gravis.
A beginning with many uncertainties
Myasthenia Gravis is a chronic neuromuscular autoimmune disease. The transmission of nerve impulses to the muscle cells is disturbed, which is manifested by rapid fatigue of the skeletal muscles. The muscles often recover quickly. However, the disease can also manifest itself in a myasthenic crisis, in which those affected can no longer move. This can even lead to paralysis of the respiratory muscles – a life-threatening situation. With around six people per 100,000, myasthenia is a rare disease. Accordingly, despite his medical knowledge, Ivan Petrusic initially knew nothing about the disease. “I did some research on the internet and saw the wide range of ways in which the disease can progress. The consequential damage and severe courses that were described frightened me,” he recalls the beginning of his illness story.
Positive attitude as a resource
A good ten years have passed since the diagnosis. Ivan Petrusic is still working in nursing, has just started another degree course and enjoys traveling in his free time, which is unfortunately not possible at the moment due to the pandemic. He leads an active life and it is noticeable how positive his attitude is. “I am convinced that my attitude has an influence on my myasthenia. That’s why I take advantage of various complementary medical treatments in addition to conventional medicine. And I also receive psychological support. A chronic illness is not only physically challenging, but also mentally. This should be taken into account,” emphasizes Ivan Petrusic.
A cancer drug as therapy
Ivan Petrusic receives infusion therapy every six to twelve months. This is a drug that was actually developed for chemotherapy for blood cancers, but is also effective for rheumatism, among other things. This medication removes certain immune cells from the blood and has been found to have a positive effect on the progression of myasthenia. The fact that there is not yet a more specific drug against the disease is due to its rarity. Rare diseases are often less well researched, making targeted drug development much more difficult.
However, being administered a drug that weakens the immune system also means that Ivan Petrusic experiences all the undesirable effects of the drug. For two days after the therapy he is very tired and feels shaky. “But I’m happy to accept that because I don’t have to take any other medication alongside it. The medication allows me to lead an almost normal life. The muscle weaknesses in myasthenia occur in cyclical episodes. With the infusion therapy, this only happens rarely for me and the attacks are less severe,” he explains.
Developing together
In addition to the various therapies, Ivan Petrusic finds the exchange with other myasthenia sufferers particularly helpful. Around twelve people from the Zurich area meet regularly in the Myasthenia Gravis self-help group. “The manifestations of myasthenia vary greatly among the members of the group. And yet everyone knows what the others are talking about. This creates a very trusting environment in which all topics can be addressed and discussed,” says Ivan Petrusic, describing the meetings, adding with a smile, “However, the average age is relatively high. I am the only outlier on the lower end. I hope that more younger people with myasthenia gravis will become aware of our group and join it.
Research into neuromuscular diseases and neurogenetics at the USZ
