One day I was in a park, waiting for my children to come out of school. My dog was epileptic, we rescued her from being put down because of epilepsy, and there in the park she had a seizure as she usually did. A woman who was sitting on a bench approached me to explain that her daughter was suffering from severe epilepsy. She told me that the girl was 18 years old but that due to her illness she had no friends and she had no one to celebrate her birthday with.
I thought about how we could help her and we requested the collaboration of a radio station in Badalona, where we explained the case and asked boys and girls of her age to gather to have a party.
As a result of this experience, and despite not having any person directly affected by epilepsy in my family, I saw that there was a need to create an association in which those affected could be informed, interact and give one another support. From the Association of Friends of the Epileptic of Badalona I went on to become president of the National Federation of Epilepsy and since then I have met many affected people … I have seen children who grew up and became adults, women who pushed ahead with their families despite their condition, men, elderly people … The social perception of epilepsy has changed a lot in recent years. Now there is more information but there is still a lot of work to do.
At the Association we have focused on education in educational centres. We consider the training of young people to be paramount, so that we have a more tolerant and informed society that understands how negative labelling is, the importance of putting ourselves in the other’s shoes and empathizing, all the positive things that we get by helping others. We are currently giving talks to more than 3,000 students per course.
Now there is more information but there is still a lot of work to do
Twenty-four years ago people thought that epilepsy was contagious, that they were aggressive, that they could not get married, that they could not work … or there were some simplistic perceptions that those affected moved their legs and arms and then that was it. We have improved a lot since then but the stigmas have not been overcome.