Personal stories

Abby uses her Instagram account to raise awareness of the realities of living with epilepsy. She is now nearly one year seizure-free, but Abby is determined to change how people approach disability and the way they talk about it. She isn’t afraid to show off her bruises, the impact on her mental health, her anxiety about travelling alone and going out unaccompanied in case she has a seizure. 

Naomi's first seizure came completely out of the blue when she was 14 years old. Doctors attributed it to a severe urinary tract infection. Four years later, she experienced another seizure and was once again told that a urinary tract infection was the cause. Several years later, after a series of tests, Naomi was finally diagnosed with temporal lobe epilepsy.

Flipping the triangle around so epilepsy and medication aren't in charge of me.

Melissa dreamed of becoming a professional tennis player from the age of 10. But at 15, after being diagnosed with epilepsy and a brain tumour, she was told she would never play tennis again.

Portia Hibbert has written a memoir, My Journey with Epilepsy, reflecting her personal journey navigating life with the condition, the trials and tribulations, the emotional and physical impacts and the importance of support from loved ones.

Milly, 21, was diagnosed with epilepsy two years ago, and earlier this year decided to travel Australia and Southeast Asia. Getting diagnosed at 18, right at the end of what she described as the best year of her life, Milly felt like her independence and freedom was taken overnight and it was something she struggled to adjust to.  

Imy Gosling and Julia Gargan have been best friends since they were at primary school together. “I joined the school after everyone else and from day one, Imy looked after me – we really bonded,” recalls Julia. “We lived very close by and really grew up together.” But being close also meant that Julia witnessed the challenges that Imy faced when she developed epilepsy as a teenager.

Yoga teacher Emma Turnbull explains how she is raising vital funds for the Epilepsy Society, after their support brought hope of a seizure-free life for her daughter, Beth.

Like many people, Shirley and Neil Adderley have been catching up with rescheduled gigs booked since before the pandemic. But every concert brings back heart-breaking memories of their daughter Fay who should have been attending with them. Here the couple explain how each concert is an emotional rollercoaster.

Martha Cronin was diagnosed with epilepsy during lockdown. She was prescribed carbamazepine over the phone by her neurologist with no warning about the risk linked to the drug for any baby during pregnancy. Martha describes how overwhelming it was to learn from her GP about the potential harm her medication could pose if she decided to start a family.

Inner Strength and Self-Belief – Confessions of a Marathon Runner with Epilepsy.

Eamonn is a restaurant and bar manager and he was diagnosed with epilepsy aged 18.

Chloe Hambling experienced seizures in her recent pregnancy and felt anxious and concerned about her baby’s health. She is now eager to raise awareness of epilepsy and to ensure more research is undertaken to develop safer drugs for other pregnant women with the condition.

Yasmin Golding is 26 and relies on a combination of three epilepsy medications to help control her seizures. But she worries about the health risk that the drugs could pose to any baby during pregnancy, should she decide to start a family.

Laura Moore, 22, has been taking sodium valproate since the age of 15. The medication has enabled her to get on with her life but she knows that if she wants to start a family it will pose a serious risk to any baby during pregnancy. Here she discusses the challenges she faces and questions why she wasn’t given more treatment options when she was first diagnosed.  

Unlikely career inspiration: from retail to relationship therapist.

Chantel Reeves was taking the epilepsy medication, carbamazepine when she discovered she was pregnant. Here she relives her anxieties about how it might harm her baby and why she is backing our Safe Mum, Safe Baby campaign.

Jade Davies worries about whether her son's health problems may have been caused by her epilepsy medication, even though the drugs she was taking during pregnancy are considered to have a safer profile.

Helena is an illustrator, graphic designer and animator currently living and working in London. Here she shares how her temporal lobe epilepsy was undiagnosed for seven years and its impact on her.

Finding strength through epilepsy and change.

Sixty Years with Epilepsy, 50 Years of Broadcasting: Ken’s Remarkable Story

Leah shares in her own words, how she had to learn to be a different 'me' following life changing brain surgery for her epilepsy.

Emma Griffith explains how being supported by the Epilepsy Society's Chalfont Centre for a decade has helped her to turn her life around and encouraged her to share her story.

Laura Grainger, 34, cannot remember her own wedding day, most holidays and birthdays, or the time she spent at university. The impact of her epilepsy means that memory loss is a huge factor in her life.

Kerry Pates was just 19 years old when she died of SUDEP. Karen Pates describes the impact of her daughter Kerry's death.

Nineteen-year-old Samantha Ahearn died of SUDEP (sudden unexpected death in epilepsy) just six months after her first seizure.

Owen Williams was 39 when he died in July 2014. His mother, Ro Williams, describes the impact of her son's death from SUDEP.

Niall Moore, aged 36, will celebrate graduating today (Friday 31 July) with a Doctorate in Childhood Studies (DChild) from the School of Social Sciences, Education and Social Work at Queen’s University Belfast.

Muir Maxwell has had severe epilepsy since he was a baby and, at 23, is unaware of how his experiences have changed the lives of many children like him. But here, his mum, Ann, explains how a Trust, inspired by Muir, has funded vital epilepsy services and still, today, makes possible some of our groundbreaking genomic research at the Epilepsy Society.

Matthew Robertson is a seven-time National Champion and ex-World Record Holder paracyclist and is part of the Great Britain Paracycling Squad. As he prepares for the eventual Tokyo Paralympics, he wants to raise awareness of the impact having epilepsy can have on being a professional athlete.

Jamie Thomson, 39, a political risk analyst and father to a 16-month-old baby, explains why he is planning to donate his brain to the Epilepsy Society Brain and Tissue Bank at the end of his life.

Holly Wagner explains how her epilepsy has been something of a rollercoaster ride but how she refuses to be defined by her condition.

Sweet Success! How Becca and the amazing team at Gemini Chocolate raised an incredible £1,000 for the Epilepsy Society.

When Ben was first diagnosed with epilepsy at 20, he tried to keep it hidden — from his parents, friends, even himself. Then, he realised how important it is to speak up.

Rick and Anne's adult son, Rudy, has Dravet Syndrome. Rudy was referred to our onsite NHS Centre, for review and assessment of his medications. While his Dad was bracing himself for difficult conversations, guided by his son, he has written about how his expectations were exceeded by the kindness and professionalism of the team at Gowers.

Madeline was diagnosed with epilepsy at the age of 13. Seventeen years later, she has written Diary of an Epileptic: The Hidden Reality, where she documents the years of medication, hospital stays, side effects and impossible decisions.