Alicja Lisowska: Awareness about epilepsy needs to be spread all the time

The year 2023 is coming to an end. What kind of year was it from the point of view of people with epilepsy?

Insanely ambitious, exciting and full of interesting events aimed at people with epilepsy. We also managed with the joint efforts of all patients, the community and the Ministry to bring about the reimbursement of another drug, this time dedicated to a narrow 30% group of people with so-called drug-resistant epilepsy.

Reimbursement decisions are very important, even crucial, but it is also not insignificant how education and public awareness function. Do people know that epilepsy is not just seizures? Has awareness also improved about how to give help to someone who is having a seizure?

Knowledge has certainly improved, as this year was full of a number of events. Very important for us were the so-called Lavender Days at the end of March, March 26 to be exact. The accompanying events had already started three days earlier. There was a conference at the Ombudsman's office, the Lavender Run in Jablonna, we had illuminations of buildings all over Poland. All the time we were going out and talking about the fact that people with epilepsy live in society and it is necessary to know as much as possible about how to help them, and above all - to treat them like all other chronically ill people.

Let's take this opportunity to remind you of this basic information, which may help someone to properly provide assistance.

It is worth noting that epilepsy is the most common neurological disease. It affects 1 percent of the population, or 440,000 people. It is a disease that can manifest itself at any stage of our lives. Just because we don't have it today doesn't mean that in 10 or 15 years we won't have it either. The important thing is that an epileptic seizure is not just one accompanied by loss of consciousness and convulsions. An epileptic seizure can also be a so-called suspension or tremor of the limbs. In such cases, the patient does not really need to be helped at all. It passes very quickly. However, if we witness a tonic-clonic seizure, when there is loss of consciousness, convulsions or salivation, it is necessary to secure the place where the patient is, so that he does not hurt himself. Let's unbutton the collar of the shirt, untie the neckerchief, so as to ensure the patency of breathing. The convulsions should not be stopped, and the patient should be placed in the so-called lateral fixed position, where he can recover after about 2 minutes. All the myths that have been repeated for years, such as that the patient should bite something to keep from biting off his tongue, have nothing to do with reality.

The goal is to achieve a seizure-free life. This is facilitated by the latest therapeutic advances. The key is their availability to patients.

We are working all the time to make access to medicines, modern treatments, as good as possible. We are trying to speak more and more loudly about surgical treatment of epilepsy, something that has been available in European countries for years, but is only in its infancy in Poland.

What challenges does the Foundation face in 2024?

All the time we want to spread awareness about epilepsy and patients suffering from it. We need to speak directly about the fact that 70 percent of patients are able to return to life in normal society and have controlled seizures. We would like to stay in the elite group of NGOs that have non-profit status. We would be able to do much more. We would also like to establish international cooperation. Foundations like ours are very much active in the US or the UK. I make no secret of the fact that we model ourselves on their actions.

Thank you for the interview.