Epilepsy Scotland’s Student Ambassador Freya sadly lost her sister Ellie to Sudden Unexplained Death in Epilepsy (SUDEP) in 2020.
Freya explains the importance for those without epilepsy to educate themselves on the condition and why she volunteered for Epilepsy Scotland.
What is your experience of epilepsy from an outside perspective?
Epilepsy has been intertwined in my life ever since my older sister Ellie was diagnosed in her early teens.
Although I would never claim to understand the difficulties that come with a personal epilepsy diagnosis, the wider effects on friends and family are an experience that may be worth highlighting.
Throughout high school and university, my sister had to deal with a system that struggled to understand her.
Many only see the direct consequences of seizures and fail to note how medication side effects, misunderstandings of the condition and comorbidities with mental health conditions can have a massive impact on quality of life for those with epilepsy.
For example, I remember how upset Ellie was when her application for a provisional license was rejected or how already difficult things like concentration when studying became ten times harder due to medication side effects.
However, none of these things ever stopped my sister from living her life to the absolute fullest. She never let her condition affect her attitude or change her plans for the future.
Although in practice this isn’t possible for everyone who has epilepsy, I believe the further we can raise awareness and improve treatment, the more people will be able to live the lives in a way they deserve.
Why is it important for those without epilepsy to educate themselves on the condition?
Without epilepsy having such a direct impact on my life, I likely wouldn’t know much if anything about the condition despite it being the most prevalent neurological disorder in Scotland.
It is probable that most people will have some type of experience with epilepsy in their lifetime whether it is through a friend, family member, co-worker or just a distant acquaintance.
Better understanding of such a common condition can not only directly help those with epilepsy but also raise the profile of the disorder meaning more resources and effort put towards improving the lives of those living with epilepsy.
What made you want to volunteer?
We lost my sister at the end of 2020 due to complications of epilepsy better known as SUDEP (Sudden Unexpected Death in Epilepsy).
Although I was aware of the risk of SUDEP, having it happen to someone I loved so much was devastating.
My family and Ellie’s friends helped raise money for Epilepsy Scotland soon after her passing and through seeing the work they are doing for others with the condition I felt volunteering here would be a rewarding opportunity.
I knew of the student campaign through one of my Ellie’s best friends Orla, who did amazing work in her name, and I am grateful for the chance to continue it.
As a university student now myself, I can understand how the challenges of being a student must be heightened when having to factor in a condition such as epilepsy and I hope that what we are working towards will help those struggling with this balance in the future.
Find out more about our Student September campaign by clicking here.