Hi, my name is Mar, I am 21 years old and I have been suffering from epilepsy for 18 years. The cause of my illness is unknown, which is why it is called idiopathic. My seizures during the day consist of me being paralyzed, losing consciousness, and falling forward; I also have night seizures, but I don’t remember them.
I had my first seizure at the age of 2, which is when I was diagnosed with epilepsy, from this crisis they started giving me all kinds of drugs to control my epilepsy, but they didn’t work because I am drug resistant. I had to go to the hospital a lot and that was the reason I repeated first course in primary school. In fifth course of primary school, I had surgery on my head in order to get rid of my epilepsy for good, but they couldn’t get it out completely because the epilepsy affected part was in the part of the brain that controls speech, for this reason still I have epilepsy. Then I started high school and in 2013 I discovered an association that was and still is very important in my life called Mar De Somnis.
“Mar De Somnis helped me understand and accept my illness, and I found my second family on his team.”
In the first activities I participated I did not feel very comfortable, I did not know many people and it was difficult for me to relate, but from the first camp in 2014 this changed radically, it was the first time I realized that there were other boys and girls who were also going through the same thing as me. I made great friends, friends who are like my family and who fortunately are still by my side whenever I need them. Mar De Somnis helped me understand and accept my illness, and I found my second family on his team.
One of the biggest problems for me from my illness is that seizures come without warning and this can be dangerous depending on the activity you are doing at the time of the seizure. In fact, in falls caused by seizures I have broken my nose, my ankle, my arm… For this reason, I participated in the test of mjn-SERAS. Is a device capable of predicting seizures by alerting the patient via Bluetooth through the mobile phone. That be able to take the necessary safety measures and avoid risks. I think the earpiece is very useful, discreet, comfortable to carry, easy to use, and can prevent many falls, which can be very dangerous.
“I hope to be able to find work soon and be able to become independent.”
Another of the problems of the disease is the lack of information that people have and the rejection of society. I have suffered this especially in school, primary and secondary, which my classmates did not understand that it was different. That was more than enough reason to marginalize me. I’m better off right now even though I’m still in seizures, I’ve taken out an intermediate degree in administrative management which I’m very proud of because I’ve had to put in a lot of effort. I hope to be able to find work soon and be able to become independent.