Case Studies

“I think a lot of adults approach epilepsy with a lot of stigma”

Section: The ALLIANCEType: Case Study

Colleen shares her experiences of caring for her son who has epilepsy and raising awareness in her role with Epilepsy Connections.

“My eldest child Calum has had epilepsy since he was four and it’s not particularly well controlled epilepsy. Basically, our whole lives revolve around that aspect of caring for him.

My son is unique. He absolutely loves the Glasgow underground. He usually chooses to go the long way round. He wants to go to all fifteen stations just so he can go and chat to people. That’s just his favourite thing to do.

My hopes are that he continues to do things he enjoys doing. It’s just an added dimension that he has as good a life as possible, whether we’re around or not. That’s one of the big worries, of setting down as good a life for him now so that when he goes into adulthood he has as much opportunity and we’re setting down as much as possible for him to help him along.

I am the Education and Outreach Worker for Epilepsy Connections. My role is visiting schools, bringing epilepsy awareness to youngsters from nursery age to primary, secondary up through college, and to teaching and support staff.

I think a lot of adults approach epilepsy as a medical condition with a lot of stigma, a lot of preconceived ideas and my hope is the generation of young people coming up with my child think this is just part and parcel of life.

The best part of my job is when I’m out in schools, I’m meeting up with fantastic young people who are always enthusiastic, asking the most profound questions. And there’s the children’s activities. It’s often the sound of young kids squealing with delight. Just hearing the squeals of delight – that’s the fun part of this job.”

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