Think of a major life moment that meant the world to you – the birth of your child, a dream wedding surrounded by loved ones or the holiday of a lifetime.
The moments you want to hold on to forever.
For some people with epilepsy, those precious memories can completely fade over time.
So much so that even a photo can’t bring back the treasured memory back to life.
Epilepsy doesn’t just interrupt moments. It can also erase them.
And it’s not just those big moments you lose. From everyday conversations to forgotten plans, it can be the little things that slip away.
As the impact of seizures and epilepsy medications disrupts how memories are formed, stored and recalled.
Become an epilepsy ally
Learn more about epilepsy and how you can protect the moments that matter
1 in 5 people with epilepsy have lost major life moments
Memory loss is a very common side effect of epilepsy. As part of this campaign we surveyed over 1,000 people. 70% told us that their epilepsy affects their every day memories. Nine in ten people have to rely on reminders to live a normal life. Most shockingly, 82% say that they feel judged as forgetful or unreliable for memory problems that they can’t control.
This National Epilepsy Week we are sharing the reality of not being able to remember the most precious moments.
Bob's Story
Bob has been married for 26 years but has no recollection of the day he married his wife.
The couple wed on a bright spring sunny day. His wife looked amazing and their two young nephews who stole the show as page boys.
But for Bob, the day itself is missing.
He only realised something was wrong after he began having seizures, when his wife started asking him about memories from their life together.
“I feel isolated from it. It is such an iconic day in our lives but my memories are only guided by others’ memories or photos.
“There are moments in my life I should be able to hold onto forever, but I can’t.”
Epilepsy already takes enough. But you can help to give back.
For people like Bob putting the pieces back together starts with taking control of their epilepsy. For many the first step is finding people who understand. Our primary focus of this campaign is asking people to become an epilepsy ally but there are other ways you can help too:
- If you can give up 10 minutes of your time each week you could join our volunteer action team spreading knowledge of epilepsy within your social circles
- 2 hours a week could pair you with someone isolated by epilepsy through our 1 to 1 Peer Support service
- 10 hours per month would enable you to vlog for Epilepsy Action telling the world about the importance of epilepsy in your own words
Explore volunteering opportunities
Amy-Jane's Story
“I don’t remember my son Joe being born”
Joe was born early and taken away for urgent care. Shortly after, Amy had a severe tonic-clonic seizure and was in and out of hospital for nine weeks. It was only later that she realised the full extent of what had been lost.
“I’ve been told what happened, but I don’t remember it. There are just flashes – my waters breaking, bits of labour…then nothing.”
“After my second brain operation, I realised two years of memory had just disappeared. I had lost the first two years of my son’s life.”
Feeling inspired? Share your story
Whether it is a missing memory or something completely different you can help us to raise awareness.
