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FREDERIKE MANDERSHELLO, MY NAME ISWhen 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. Not really.
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IMPACTLIVING WITH EPILEPSYLike many people with epilepsy I have great difficulty with the label "patient" because of the stigma that comes with it.
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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.
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In developing my idea I got help from an unexpected source: Dick Janssen of Ideeënlab.
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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.
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In two hackathons our team developed a first and second prototype of a mobile epilepsy simulator representing different kinds of seizures.
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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!
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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.Support us!