What does a person with epilepsy look like, according to the beliefs of Poles? Myths still alive...

You are the president of the foundation, a mother, a professionally active person, but you also suffer from epilepsy, "which is not visible from you at all." Do you often encounter such a statement?

Yes, just as soon as I heard: "what you can't see from you," I thought: aha, this is the moment. I hear this often, especially from people I didn't know before, when I tell them about my illness. At such a moment I always laugh: then what should I look like, should I just write it on myself somewhere, wear a T-shirt that says "suffers from epilepsy"? What does a person with epilepsy look like, according to the belief of Poles?

So is there a lack of knowledge bowing here?

Yes. Professor Joanna Jedrzejczak of the Polish Society of Epileptology said that in the early 20th century epilepsy was treated with bromine. A side effect of such treatment was skin lesions. Seeing, for example, on the street or in the immediate circle of people, a person just with the characteristic skin lesions, people could have a suspicion, and some still have it now, that it is a person with epilepsy. This frankly concerns me because of the fact that it is the maintenance of a stereotype.

What surprised you most about the results of the survey on the stigmatization of patients with central nervous system disorders?

There are several such issues. The first thing is that as many as 50 percent of those surveyed thought it was true that patients with epilepsy should be isolated. Usually, we isolate patients who are very infectious or patients who threaten society. A person with epilepsy is not one of these people. The second thing that surprised me about these surveys: the people who fared worst in them were those in the 16-24 age range. This is a group of young people who should not be affected by stereotypes, who have access to information that says we should treat everyone equally and there should be no discrimination, and are able to verify certain things. After all, we are talking about the fact that this is a group of people who were born with a smartphone in their hands, are allergic to all kinds of post-truths, fake news. And this is the one that fared the worst, despite the fact that, as I mentioned, it is not tainted by myths. The older generation, for example, was tainted by such a myth that one should put an object in the mouth during a tonic-clonic seizure. This is how the older generation used to be brought up. Today, we know that we absolutely should not behave this way. That being said, it surprises me that such a broad and young population group fared the worst in the study. The last point, which also affected me very strongly, is the information that 20 percent of people in this age range believe that epilepsy should be treated with bioenergotherapists, coaches or exorcists of any kind. We must very strongly emphasize that epilepsy is treated by a neurologist or by a doctor who specializes in epilepsy, namely an epileptologist.