Hello, my name is Lia, I have lived with Nocturnal Epilepsy since I was 11 years old. My first crisis was while I was sleeping, I remember that I did not understand what I was feeling, I only knew that something was not right but I could not wake up, I could not talk, move, ask for help or get up. I began to feel tingling all over my body, rising from head to toe, and noises of metal blows (like industrial noises) in my head. For a second I thought I was dying and suddenly everything happened, I disconnected from everything that was happening, today I understand that at that moment I lost consciousness. I woke up the next morning without knowing what had happened. I told my mom and she asked me several times if I was sure I had really been awake because maybe it had been a nightmare. And it would make all the sense, because I couldn’t wake up, talk, or move until the next day when it dawned.
A week later my older sister (we shared a bedroom) was not sleeping at home and I was terribly afraid to sleep alone. I begged my parents (I was 11 years old) to let me put my mattress in their room to sleep with them. At midnight that strange sensation came back in the same order, tingling, inability to move, wake up, talk and metal noises; I managed to kick my parents’ closet to alert them and then lost consciousness. My father is a doctor and the noise from the closet woke him up, then he saw me convulsing. I woke up and my mom was nervous, walking from one side to the other; my dad explained to me that I had convulsed.
From then on, the medical tests began. I had a few more seizures and finally, the diagnosis came: nocturnal epilepsy of the frontal lobe, with generalized tonic-clonic seizure type; over the years I have developed focal points. Everything always happens only and exclusively while I sleep.
I have experienced all the facets of those of us who lived and grew up with epilepsy: fear, uncertainty, misinformation, anxiety, stigma, etc., but there has always been a part of me that tells me that I owe it to epilepsy to be who I am and that I need to educate people about this condition to end the social stigma, which often begins with ourselves, when we decide to keep quiet for fear of prejudice or social rejection.
It is from this need that last year (2018) I initiated a project called “Fundepsia” a space to raise the voice and educate people with and without epilepsy about this disease. It currently has more than 2,400 followers on Instagram, from different countries in Latin America and some cities in Spain.
I have created a support network, for me, we are a family made up of people of many nationalities. My purpose is to put my grain of sand in the creation of conscience on this condition and my dream is to live in an inclusive society, informed, without stigmas and free of myths product of the little education on the subject. I firmly believe that the basis for combating stigma is to create awareness that epilepsy can appear in anyone’s life at any age, at any time.