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Attending the 2019 International Epilepsy Congress as a Person Living with Epilepsy

Epilepsy News From: Friday, July 19, 2019

With the support of my colleagues and Epilepsy Foundation President and CEO Phil Gattone, I was nominated to represent North America for the first international Golden Light Awards. I was honored to be nominated and thrilled when the International Bureau for Epilepsy (IBE) selected me as a winner. With the award, I was able to attend the 33rd International Epilepsy Congress, a joint effort of the International League Against Epilepsy and IBE, in Bangkok, Thailand, from June 22-26, 2019. I did not take this opportunity lightly and considered it an enormous privilege to attend this congress as a person with epilepsy. 

Golden Light Awards Forum

The 2019 Golden Light awardees are the first international group of winners representing the different IBE chapter regions. We also were the first Golden Light awardee group to give presentations at the congress. The forum was co-chaired by Professor Martin J. Brodie MD, president of IBE, and Ann Little, executive director of the IBE. 

Golden Light Award Forum Presentation
 

Speaking at an event where the top experts in epilepsy gather was certainly intimidating and nerve wracking. I was comforted when I arrived at the session when I realized I was not there to be judged by anyone but listened to as a person living with epilepsy. The forum included all the awardees telling their stories of living with epilepsy. It amazed me that, despite our cultural and geographical differences, parts of our stories were so similar. We all struggled with losing friends, feeling judged by others, and searching for medical answers. 

The most amazing connection we shared though was our ability to overcome our obstacles.

Each of us chose to reflect on our experiences and use the ups and downs to fuel our fight for change.

Whether by writing a book like Michela Sofía Betanzo Quero or exploring new areas of epilepsy research like Amirsoheil Pirayeshfar, we are helping bring epilepsy into the light and out of the shadows every day.

Empowering People with Epilepsy

Golden Light Award Winners Wear End Epilepsy Bracelets
 

The session on empowering people with epilepsy was chaired by Mary Secco, director of strategic initiatives at Epilepsy Southwestern Ontario, and Francesca Sofia, founder and chief of Science Compass. The session gave me a truly global perspective on the work being done to advocate for epilepsy. The audience also got to learn about our END EPILEPSY®️ campaign in the United States from Phil Gattone. 

Shenaz Haveliwa, an epilepsy advocate, told her story about living with epilepsy in India. Diagnosed while studying to become an aeronautical engineer, she chose to use her voice to challenge the misperceptions about epilepsy in her country. She now speaks at seminars and to the Indian media about her experience, as well as writes about epilepsy online and runs a successful business. 

One of her closing quotes has stuck with me since my return from the congress. She said, "I stopped grieving what I had lost and started rejoicing in what I had." I hope everyone with epilepsy can find their way to rejoicing, despite the roadblocks that come our way. 

A Public Health Imperative 

The 33rd International Epilepsy Congress included the launch of Epilepsy: A public health imperative, the first global report on epilepsy produced by the World Health Organization (WHO) and other key partners, including IBE and ILAE. The report provides global-level information about the burden epilepsy has put on people living with it, their families, communities, and societies. 

As a person with epilepsy who graduated with a Master of Public Health, I was honored and thrilled to be in the room during this announcement. While people with epilepsy have our own hurdles and challenges in the United States, it is clear there is so much work that needs to be done globally. 

Closing Thoughts

At the opening ceremony for the conference, traditional Thai dancers gave a performance that symbolizes how the different kingdoms in Thailand came together to form one unified nation. While it may not be as beautiful as this choreographed Thai dance, our different organizations are united in our fight to change the status quo for people living with epilepsy in our different regions. 

Thai Dance of Unity
 

Our work is often very local, but the benefits of talking about epilepsy openly and meeting as this congress are truly global. And I know for myself and the other Golden Light Award winners, people with epilepsy are excited and ready to be part of that change.

Authored by

Liz Dueweke MPH

Reviewed by

Andres M. Kanner MD

Reviewed Date

Friday, July 19, 2019

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