This is the personal story of Susana Ortiz shared through our website to explain to the world her fight against epilepsy.

At age 12 I started to suffer involuntary movements when I had to speak in front of my classmates. This affected me at the relationship level in the school. I was six years changing medication and suffering daily and varied crises, I saw many neurologists. I remember that the first one said that it was a consequence by the separation of my parents, that I wanted to get attention.

I feel that being a girl, I had many responsibilities that most of my friends did not have, because of the medication, so as not to disturb my sleep, stop doing activities that put me in danger … The epilepsy made it mature earlier. This is why I say that epilepsy is part of me, that it has taught me a lot and I feel that without it I might not have been the person I am today. I consider myself a person very overturned with the disease, my goal is to unmask the epilepsy and raise awareness. I try to do it with my blog and my Youtube channel: Colasyta.

I am from a town in Jaén called Huesa and my mother and I have done many kilometers in those six years until arriving in Barcelona, ​​where I was diagnosed with epilepsy. Finally they gave name to what was happening to me!

With my channel on YouTube I want to unmask epilepsy and raise awareness

With my channel on YouTube I want to unmask epilepsy and raise awareness I can get to have about 20 crises a day, generally partial crises, but I also have complex partial, with and without auras. I suffer some falls where I can lose consciousness by seconds. My epilepsy is diagnosed as drug-resistant so the medication has no effect. I had an epilepsy operation, I have a vagal stimulator, I have tried almost all the drugs, without result, I continue with a crisis every day.

A limited future

I left my studies, since it was impossible with so much drugs that I need to take. I would have liked to work in the army or the police to help people. I worked for seven years as an administrative assistant, that period was very happy for me. To this day I do not work, I suffer a limp that limits my mobility since I had to learn to walk again because of paraplegia in the left leg caused by the operation related to epilepsy. Not being able to walk, losing contact with people and spending a lot of time alone caused phobia and anxiety.

I consider myself a fighter, but there came a moment where at the level of solutions for my epilepsy I realized that nothing else could be done and I had to accept it. I have gone through periods of depression but I am finding myself again. The YouTube channel helps me and we are already a nice family.

‘To fly on my own for a while’

When I collaborated with MJN I did it to help in the research. In case I could have the device they are developing, I would be more independent and it would help me, as I say, to fly on my own for a while.

It is very important to spread awareness. People affected by epilepsy suffer stigma, people are afraid of us because they do not know what is happening to us and they are always afraid of the unknown. We also suffer discrimination when looking for a job; nobody wants an epileptic to work in their company due to ignorance of the disease. But we are much more than ‘epileptic people’, we can be competent people, with skills and knowledge; we can be good friends, good professionals, good children, good parents …

Those affected with epilepsy like me have to ‘come out of the closet’, tell what happens to us and not be ashamed, with the aim of normalizing the disease. Until this happens we will suffer the most serious part –and the worst– of epilepsy: social rejection with all that this implies.

MJN-SERAS

Find out your risk of having an epilepsy crisis at any time and place.

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MJN

Nuestro sueño es ayudarte a hacer realidad tus sueños

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