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Luke’s story: helping to end epilepsy

Luke

Luke

Epilepsy Research UK Supporter

- Ending epilepsy Luke’s story: helping to end epilepsy

Date Published: May 9, 2023

Author: James Matejka

Luke is 20 years old and was diagnosed with epilepsy in November 2022 after four years of experiencing seizure-like episodes. In today’s blog, Luke discusses his search for a diagnosis, learning to manage seizures and the swimming challenge he’s taking on to raise vital funds for research.

Epilepsy has affected my life in many ways. It has taken driving away from me – a seizure that led to my ban only a few months after having passed my test. Epilepsy has changed the way I look at life, especially with the knowledge that a seizure – particularly the ones I have – can come from out of nowhere and potentially take my life. It’s a scary thing to be conscious of and makes me double check everything. I would say I have developed a form of PTSD, as any feeling of a seizure happening or about to happen does terrify me. Some of my seizures are brought on by stress and lifestyle habits, which has taught me to slow down and take everything as it comes.

Throughout my life I have had multiple episodes that were just under the radar of known causes. Since 2018, I’ve been having a reoccurrence of seizures and multiple tests and hospital trips. It took four years to get an epilepsy diagnosis in late 2022. If I’m honest, the news was hard to take and hard to believe, especially now knowing it will be with me for the rest of my life. The effects and potential consequences of epilepsy can be scary. 

I’ve been doing swimming challenges for a couple years because it’s one of my favourite hobbies and a fun way to raise money for the causes I care about. I had a fantastic response last year and raised over £800 for a cause close to me, so this year I want to attempt to raise over £1,000 for a cause that now directly affects me – research into epilepsy. More than ever before, learning I have epilepsy has made me want to raise money to help people with a similar experience to mine. I will be attempting to swim 2.5km in under an hour, which would beat the record I set last year of 1 hour 6 minutes. 

I believe it’s important to fund research into epilepsy because the condition can be so hard to diagnose and so dangerous for those without diagnosis, especially if it comes out of the blue as I experienced first-hand. So, the more we know, the more we can help people live a life without epilepsy. It can be a very scary thing to face alone.  

To someone who has been newly diagnosed I would say: don’t overthink it, slow yourself down and take some time. Know that you’re not alone and please talk about it. Ask questions and get help if you need it. There is a lot to learn and understand about your body, rather than just seeing epilepsy as ‘something wrong with you’.  

I would love for research to be able to detect epilepsy earlier so that people can be warned and the experience I had could be prevented for others. I would love to people to be able to live with a lot more peace of mind and less worry or problems in their day to day lives. To let people be able to breathe whilst living with epilepsy.  

To read more about Luke’s challenge and support his efforts, please visit his Go Fund Me page.