Thomas Daws has been given this month’s Epilepsy Star award. He was nominated by his partner Katie, who discovered she had epilepsy after going into hospital for an ear operation.
Katie’s epilepsy journey has had many ups and downs – including relearning how to speak – but Thomas’ ongoing support has made “a world of difference”. Katie shares their story.
“I was diagnosed with temporal lobe focal epilepsy in the summer of 2016. This came a few months after an MRI scan for an ear operation revealed I had an atrioventricular malformation (AVM) in my left temporal lobe. The diagnosis came as a bit of a surprise, and it was a huge learning curve. I’d only ever heard of tonic-clonic seizures and I didn’t even know focal seizures were a thing, despite having them on a daily basis.
“My seizures involve me experiencing déjà vu before spacing out and experiencing hallucinations, where I think I can see things but can never recall what they are. I often also have right hand and head tremors with them.
“Since my diagnosis, it has been quite a journey. It started with trialling what felt like dozens of different anti-seizure medicines, which sadly didn’t work in my favour. The next step led to a year of tests, both medical and intelligence, to determine whether I could undergo brain surgery to have the AVM removed. Unfortunately, the AVM was found to be partially based in my hippocampus, so brain surgery went out the window. The only option left to me was Gamma Knife radiosurgery (GKR) in Sheffield.
“I finally underwent GKR in September 2022, primarily to remove the greater risk of stroke that AVMs bring, but also with the hope that it may reduce my seizures. Currently, the AVM has decreased in size, and all is seemingly improving. I’ve gone from having around three to four seizures a day at diagnosis in 2016, and at least two per week prior to GKR, to having no seizures in the last two months!”
Katie’s epilepsy diagnosis impacted her “whole way of life” and her study and career plans were all affected.
“The moment I had my diagnosis, my whole way of life and plans for the future changed. I was due to go to university to study veterinary medicine but was declined entry on disclosure of my epilepsy diagnosis. Finding my dream career still continues to be a challenge, with the inability to drive hindering most opportunities for me. After a few years of solo travelling, and later obtaining a master’s degree in biological sciences, I have pushed on into the world of work. I have brilliant support from my colleagues who encourage me in all aspects of my current role as a data consultant, which makes it all worth it.
“Tom and I met through online dating (thank you Bumble) toward the end of 2019 and had our first date in Stratford-upon-Avon where we talked for hours on end. I believe I had it on my profile that I had epilepsy because, by this point, I was quite open about my diagnosis and had come to terms with it, so would quite happily discuss it with anyone who asked. Then, thanks to COVID-19, I moved in with Tom on 26 March 2020 (Purple Day!) and never left!
“Every day I can count on Tom to make me laugh, be a shoulder to cry on, be someone to talk to about everything going on, big or small, practice karate (which Tom introduced me to) or just sit in silence while we enjoy a good movie or TV show. He is always checking in on me. Even when he is at work I get: ‘How are you doing today?’ messages. Additionally, on days where I am not doing so well – whether from having a seizure or being absolutely conked out by medication fatigue – he asks me what I’d like for lunch or dinner before heading to the kitchen to put it together for me.
“Since having Tom in my life, his support has made a world of difference. He has been by my side through so many appointments, my GKR treatment and has helped me view my epilepsy diagnosis in a different light: not as a negative entity but as something I can live an amazing life with. He constantly reminds me that while there are some limitations, there are no boundaries, so if I want to achieve something, such as my degree, I can.
“With all the challenges I have faced – whether it be constant fatigue, memory loss, social anxiety or seizure anxiety to name a few – I have always made sure to surround myself with those I love. Family, friends, my partner Tom, and our rescue greyhound, have all supported me on my journey, and are there for me when I am struggling, because they all know how to reassure me. I have also found solace in basic breathing techniques and journalling, which I learnt from many hours of therapy, to help centre myself and reduce any heavy stresses.”
In August 2023, Katie begun to have more seizures and, later that year discovered she had a swelling of the brain.
“I unexpectedly started to experience more seizures and daily migraines. This continued through to October, despite going to A&E multiple times with Tom to query it and instead being turned away and told to increase my medicine dosage and take time off work. On 7 October 2023 we had just returned from walking our dog and my head felt as though it was on fire. It later progressed into a seizure that I didn’t come around from. Instead of calling the emergency services, who would take me to the local hospital, Tom carried my unresponsive body into his car and drove me straight to the hospital where my neurologist is based. He stayed by my bedside while they ran all the necessary tests and found the culprit behind all that had been going on over the last few months: an acute cerebral oedema (a swelling of the brain).
“After being discharged, my family looked after me and Tom worked close to home to ensure he could get to me should I worsen. The incident also left me unable to talk due to trauma and he, alongside NHS speech therapists and my family, helped me relearn to speak. Tom also ensured I was taking my huge list of new medication. He cooked wonderful meals to make sure I was eating well, drove me everywhere for appointments, and cared for our dog and cat.
“On top of all of this, Tom was coming toward the end of the second year of his radiography apprenticeship, so not only did he juggle multiple assignments and tests but he also took on the care of me – something I will forever be grateful for.”
In her thanks to Tom, Katie said: “Thank you for being my best friend, partner and life saver. You have always been there for me and what you went through for me at the end of last year just shows how incredible of a person you are. I am one lucky girl and I love you to the stars and beyond.”
Accepting the award, Tom said:
“It was a lovely surprise to be told I’d won this award. I wasn’t aware I’d been nominated and I think it’s a wonderful way to share our story. I’ve been enjoying reading previous winners’ entries since learning about the award.
“Working in radiology in a hospital, I had come across patients with epilepsy, but even so my knowledge of what it’s like to live with epilepsy was very limited. Since meeting Katie I have learnt so much about her condition and what living with epilepsy means to her. I’ve learnt about the different medications she has been on, all the side effects that come with those, and that even after many years her condition can change quickly and needs to be adapted to.
“I am always so proud of Katie. She is a constant inspiration to me. When going through some of the scariest moments medically, such as when she lost her voice after a large seizure, Katie always stayed positive and could keep a smile on her face. Katie and others living with epilepsy are the real stars in my opinion.”
“Working in radiology in a hospital, I had come across patients with epilepsy, but even so my knowledge of what it’s like to live with epilepsy was very limited. Since meeting Katie I have learnt so much about her condition and what living with epilepsy means to her. I’ve learnt about the different medications she has been on, all the side effects that come with those, and that even after many years her condition can change quickly and needs to be adapted to.
“I am always so proud of Katie. She is a constant inspiration to me. When going through some of the scariest moments medically, such as when she lost her voice after a large seizure, Katie always stayed positive and could keep a smile on her face. Katie and others living with epilepsy are the real stars in my opinion.”