How I Live a Happy and Healthy Life With Epilepsy

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Sophia is sharing her journey from being diagnosed with JME to living a happy and healthy life with epilepsy

By Sophia Luongo

My name is Sophia, and I was diagnosed with juvenile myoclonic epilepsy (JME) in June 2018, when I had a tonic-clonic seizure at 16 years old. For several months before my tonic-clonic seizure, I experienced some symptoms of epilepsy, such as uncontrollable movements of my arms. Since I had no way of understanding symptoms of epilepsy, I ignored these signs.  

During this time, I was also facing several personal challenges. As a result, I was constantly dealing with high levels of stress and sleep deprivation. Whenever I reflect on that period of my life, I understand clearly why I was stressed and not getting enough sleep, since I was dealing with major obstacles while still trying to continue my daily routines.  

On the morning of June 5, 2018, I had a tonic-clonic seizure while I was going to school on the bus with my friends. I only remember my shoulders shaking uncontrollably and then waking up later on the bus. Luckily, my friends took steps to ask for help and to get medical assistance. When I woke up, the bus was empty, and the paramedics brought me into the ambulance. I could tell I had lost consciousness, and I felt out of control.  

After a while, I felt extremely lucky when I received great care at the hospital, and many family members and friends stayed by my side. When I talked to the doctor and received the diagnosis of JME, the diagnosis surprisingly made me feel relieved. My doctor helped me piece together everything that had been happening in the months leading up to my tonic-clonic seizure. I immediately started anti-seizure medication, which I still take today. Taking this medication makes me feel safe and has a huge positive impact on my life.  

After I left the hospital, I recovered at home and started taking better care of my physical, mental, and emotional health. I was so thankful that my family and friends kept being there for me. I was also thankful for the amazing teachers and administration at my high school, who showed the most compassion and support. Having a strong support system really helped me deal with everything and develop a healthy lifestyle. I started spending more time being involved in activities and places where I feel calm and happy.  

While I was recovering at home, I even received a video with a supportive message from Laurie Hernandez, who participated in the 2016 Summer Olympics with the U.S. women's gymnastics team! That message felt very special and impactful, since I became a fan of Laurie Hernandez in 2016.  

Although I still face some challenges with my epilepsy and continue to be cautious of my safety, I am thankful that I can live the life I want and be healthy!  

One important lesson that I have learned since I was diagnosed with epilepsy is that epilepsy is much more common than it seems. It is important to raise awareness about the steps to take to help when someone is having a seizure. It is also important to raise awareness of the signs of seizures and epilepsy so that people can receive proper care and live full, happy lives. This journey has allowed me to be more vulnerable and to share my experiences more deeply with the people around me. 

Reviewed By: Sara Wyen

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