National Epilepsy Week 2026.

SaraC_Scope
SaraC_Scope CP Network, Scope Posts: 446 Pioneering
edited May 26 in Talk about your impairment

Shout out to all those living with epilepsy and the support network around them.

National Epilepsy Week.jpg
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  • Holly_Scope
    Holly_Scope Posts: 6,351 Online Community Team

    Thanks for sharing @SaraC_Scope. Both my nan, mum and brother have had epilepsy. My Nan and Mum don't anymore but my brother still does. It was very big part of my upbringing as my mum suffered really bad with it. You could tell it was coming on as she would jitter (as we used to refer to it) and she wouldn't be aware it was happening. The amount of times she would hurt herself falling down the stairs etc.

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 446 Pioneering

    @Holly_Scope Thanks for sharing your family's story. Epilepsy has a massive impact on the person with the condition and the wider family. It's so unpredictable and scary for those caring for the person. My epilepsy is now under control but I take a large amount of medication to keep it that way. It's the hidden side effects many people don't understand.

    Because I've been seizure free for 19 years, people assume I'm better! But it's so much more complicated than that.

  • sben
    sben Community Member, Scope Member Posts: 149 Empowering

    I, myself have epilepsy, and find it very difficult to cope.

    Even though I am on medication, I still have a lot of seizures.

  • Holly_Scope
    Holly_Scope Posts: 6,351 Online Community Team
    edited July 3

    Hi @sben sorry to read that - it must make things very difficult. Both my mum and brother have/had it and especially for my mum, it really impacted her day to day. Have you had a review of your medication recently and are you with a specialist?

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 446 Pioneering

    @sben Living with Epilepsy is so tough. Unless you experience seizures, no one else can truly understand how scary and uncertain life can be.

    Do you have appointments with a specialist or have an epilepsy nurse in your area? I always kept a seizure diary to report changes at an appointment. I was diagnosed with epilepsy at the age of two and finally found a medication combination that worked at the age of 30.

    I would recommend speaking to Epilepsy Action for more advice and support. They have a helpline and a community of people who also have epilepsy.

    If you would like a conversation, I'm here to support.

  • sben
    sben Community Member, Scope Member Posts: 149 Empowering

    I have been living with epilepsy for 12 years.

    I do find it very difficult to cope, as my seizures are unpredictable, and I have both unconscious seizures and physical fits.

    I do have appointments with a neurologist, but it is very difficult, because of long waiting times, and the medical professionals are always in a rush.

    I, myself do keep a seizure diary, but at times, it makes me feel that medical professionals do not believe any thing that I say.

    I am a member of Epilepsy Action, in which I do receive the Epilepsy Today magazine, and always have a look at their website.

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