Experience with young person with epilepsy living away at Uni?

Hi all. Does any parent or Uni student have experience of living away and how they stayed safe?
Our daughter had one seizure in the middle of her A levels in June 2022. She went away to Uni in the September and has not had any further seizures. After some EEGs earlier this year she was diagnosed with epilepsy in June. She’s now on medication but obviously we are worried about her going back and living in student accommodation in case she has further seizures.
Does anyone have any experience of a similar situation and if so what did you put in place for safety?

Hello Jake,

I have the same question.
My sons epilepsy has been unstable recently and he has a place in halls at university.
I feel very anxious about the whole thing, but want him to live as full of a life as possible.
It’s hard.

Hello there guys!

My name is Phoebe and I have been diagnosed with epilepsy since I was 15. My parents worried about how I would cope with handling my GCSE’s, A levels and degree during my time at university. Only recently (the last year I am now 20) have my seizures dropped from 2-3 a day to 1-2 every other month.

To ensure my safety during my time in education is letting the surrounding community know about my condition and how they would deal with the situation before anything happened. I know it was awkward meeting new people and the first thing was me telling them that I have temporal lobe epilepsy and they should watch out just incase I were to have a seizure, but the majority of people understood I was afraid to be alone and they would look after me. By making sure my friends and teachers knew about my condition meant wherever I went people would be there to help. Whether walking to the shop, to classes or heading out for the night, people would follow and make sure I got back safely. On times where I did travel alone, I would notify the people I shared accommodation with knew where I was and when I got home just to be sure. And if they didn’t hear back, they would come and check.

It worried my family but communication is everything, make sure your children’s friends will be by their side at a time of need as that is what friends are for!

I also carried an alarm which I pressed when feeling like I was going unconscious to alert my friends and if that button was pressed they would come to rescue.

Instead of worrying, believe that there are good people in this world who will help look out for your children :slight_smile:

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Thank you Phoebe,
It is very reassuring to hear a first hand experience.
Thanks for sharing.

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