The countdown has begun for the 35th International Epilepsy Congress (IEC2023), which will take place 2 – 6 September 2023, in Dublin, Ireland.

This year, an innovative addition promises to infuse the event with fresh perspectives – the participation of citizen journalists – with the aim of bringing the voice of the people with direct experience of epilepsy to the forefront. These individuals, whose lives have been directly touched by epilepsy, either through their own personal diagnosis or by providing care to someone with the condition, are positioned to provide a distinctive perspective through which IEC2023 can be experienced.

Bridging The Gap Between Clinical and Lived Experiences

The concept of integrating citizen journalists into a medical congress like IEC2023 reflects a broader trend in healthcare – a shift toward person-centered care. This approach acknowledges that persons with lived experience of a condition and their caregivers possess a wealth of insights that can enhance medical understanding and patient outcomes.

As Dublin prepares to welcome a diverse array of attendees, the stage is set for an unforgettable event that not only advances medical knowledge but also elevates the voice of lived experience.

Zambian Jessie has been living with epilepsy since 1994 when she was just 14 years old. Her epilepsy diagnosis and first seizure were stigmatized by society due to epilepsy’s association with spiritual attacks. The major hospital that deals with epilepsy cases in her country also deals with mental health issues, so her mother was challenged with the notion that her daughter was “mad.”

Medical treatment and counselling have allowed Jessie to manage her seizures and live a normal life. Since graduating from university, she has worked in the banking sector as a Gender and SME specialist. She advocates for those living with epilepsy directly by sponsoring medical bills and indirectly by speaking openly about her condition on social media and the radio. Her son has also been encouraged to accept the condition and explain it to his classmates and teachers. This has resulted in a major difference between her life and his as an adolescent with epilepsy. It is her belief that “spreading more information about epilepsy and opening up about it would help lift the stigma, for those with the condition both self-afflicted and that afflicted by society.”

Preston Reilly works as an educator and student affairs professional at the University of Chicago. He holds both a Ph.D. and M.S. in higher education, as well as a B.A. in psychology. As an aspiring university president, Preston’s day-to-day work surrounds supporting and advocating for college students. Currently, he serves as an Assistant Dean of Students in the College at the University of Chicago.

In 2016, Preston met his wife Alison, who lives with epilepsy. Right after they met, Preston was quickly promoted to the role of “caregiver” and began following Alison’s lead as a fierce advocate for others with epilepsy. Over the years, Alison and Preston have navigated pre-surgical processes, medicine changes, family planning, a Zoom wedding in a pandemic, and all the many other stresses that come with living with a chronic condition in your mid-30s.

Deirdre was diagnosed with epilepsy when she was 14 years old. She has been an advocate for many years at local and national levels and has held positions including Fundraising Chair, Vice Chair and President of her local association. She has chaired the Purple Day for Epilepsy campaign, founded by Cassidy Megan in Nova Scotia, and served as President of the Canadian Epilepsy Alliance.

Deirdre has won many awards for her volunteer service over the years, including the Nova Scotia ‘Women of Excellence’ award, which recognizes women who have helped people within their community achieve successful outcomes for charity work. Currently, she serves as Vice Chair for the North American Region of the International Bureau for Epilepsy. She has done many speaking engagements with media and has done presentations nationally for the Canadian League Against Epilepsy, and shared national accomplishments at IBE conferences when asked to represent.

Anita is a mother who takes pride in her role as a caregiver to her daughter, Nina Mago, who is the founder of the Purple Bench Initiative, an organisation championing epilepsy awareness to reduce stigma and discrimination and ensure persons with epilepsy live dignified, meaningful and highly impactful life.

An international development leader who has worked with grassroots communities for more than 25 years, Anita is the Program Director of Purple Bench Initiative. She is an ardent advocate for the rights of persons living with epilepsy.