February 13, 2023 is International Epilepsy Day, a day that provides “a platform for people with epilepsy to share their experiences and stories with a global audience.”
This is important because epilepsy is “one of the world’s oldest known medical conditions”, there is still misunderstanding, fear, and reluctance to learn and talk about it. This all leads to discrimination and misunderstanding everywhere, from the workplace, to communities and even lack of funding for research and therapies.
Many people living with epilepsy fear being judged, misunderstood and even discriminated, and don’t open up to others about it. This is why Epilepsy Day is so important and why we need to talk about it. People need to know that:
- 65 million people around the world live w/ #epilepsy
- 3.4+ million people in the U.S. live w/ #epilepsy
- 1 in 26 people in the U.S. will develop epilepsy at some point in their lifetime
- 4 to 10 out of 1,000 people on earth live w/ active #seizures at any one time
- 150,000 new cases of #epilepsy are diagnosed in the U.S. each year
- One-third of people w/ #epilepsy live w/ uncontrolled #seizures because no available treatment works for them
- For 6 out of 10 people w/ #epilepsy the cause is unknown
- Each year, more than 1 in 1,000 people with epilepsy die from sudden unexpected death in epilepsy, known as SUDEP.
- 4 out of 10 people w/ #epilepsy in the industrialized world do not receive appropriate treatment
- 8 out of 10 people w/ #epilepsy in developing nations do not receive appropriate treatment
International Epilepsy Day- Epilepsy Foundation
Living with Epilepsy can be very scary, but there should never be fear of talking about Epilepsy. It is one of the world’s oldest known medical conditions and 65 million people live with it. It’s important that we, patients of epilepsy, talk about it and it’s important that people listen. We can help each other understand, be less afraid and more prepared. We need to tell people around us so they don’t panic and know what to do if we have a seizure. Even if I am responsible for taking care of myself and taking my medication, the people close to me are always paying attention to me having them and taking them on time.
For me, it was difficult to talk about because I had no idea, I didn’t remember the seizures. Then I began to feel the aura or the warning sign and felt tired after the seizure. I can only talk about the one seizure I remember, the last one I had. I remember my mom sitting next to me in my bed, one hand on me so I knew she was there, but not trying to hold me down, saying reassuring words.
I remember feeling like I was running a marathon, one of my legs kept kicking and I just wanted it to stop. I also lost control of my arm and I wanted it to stop moving. I was tired, I wanted it to stop and I tried. Eventually it just stopped and I could finally rest ,but that memory just doesn’t go away.
I don’t like it, but as long as that memory is there, I will always remember to take my anti-seizure medications, I will do everything I can to avoid another one and I will do my part to help other epilepsy patients and keep talking about it.
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