HELLO, MY NAME IS
When I was about 4 years I got diagosed with epilepsy.
So this is the story of my parents. They didn’t know what the diagnosis meant, what to expect and how to handle that. And to be honest, neither did the neurologists.
LIVING WITH EPILEPSY
Like many people with epilepsy I have great difficulty with the label "patient" because of the stigma that comes with it.
Ofcourse epilepsy has a great impact on my life. However, I didn't let it stop me making life choices. For example, I played rugby for many years, I even was a member of the national women's team.
Most people don't know or notice that I have epilepsy, but I always have to take it into account.
As a photographer I tried to visualise what is happening during an absence. The impact of it and the response to it was overwhelming.
People called it an “eye-opener”.
It was not enough. My goal is to let people walk in my shoes, to let them really experience what it is like to live with epilepsy.
To pull down the barrier between people with eplilepsy and their family and caregivers. To remove any kind of stigma or intolerance.
In developing my idea I got help from an unexpected source:
Dick Janssen of Ideeënlab.
He proposed to take part in a "Hackathon" with my wish.
(A Hackathon is a marathon workshop in which "hackers" and designers work together to develop ideas to working prototypes.)
In our opinion, the best way to tear down the barrier between people with epilepsy and their family and friends, is to build an immersive simulation of life with epilepsy.
This gives insight in “our” world and can start the dialogue.
In two hackathons our team developed a first and second prototype of a mobile epilepsy simulator representing different kinds of seizures.
The premise is simple: in a virtual world we took an everyday and apparent safe environment to let people experience the impact of epileptic seizures and absences on daily life.
I showed the first prototype of this project to my parents and they were hugely affected: “is this really what you are experiencing?”.
More than 40 years after my diagnosis they finally understood!
During the Dutch Design Week many people tried INTERU_PSY for the first time. It raised questions and started discussions.
But as with my parents the dialogue between people with epilepsy and their family members or friends shifted from concern to understanding.
It is time to take the next step in the development of INTERU_PSY!
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