Our longstanding supporter Emma Dearling is taking on a new challenge this summer and taking part in Miss GB Surrey, hoping to shed more light about epilepsy in the community.
Emma was diagnosed with epilepsy in 2019, after battling to get a diagnosis. After her diagnosis, Emma realised she’d been living with symptoms for over a year. Tests also revealed she had focal seizures with ictal asystole – during seizures, her heart actually stopped.
To confirm this, Emma spent a week in hospital where doctors withdrew her medication and sleep-deprived her to trigger seizures. She was then fitted with an implantable loop recorder, which showed that in one year her heart had stopped three times during seizures. On Christmas eve that year, Emma had a pacemaker fitted after her heart had stopped for over a minute.
Side effects, discrimination and relationship breakdowns
Epilepsy completely changed Emma’s life — physically, mentally, and emotionally. The medications she has tried caused severe side effects, including extreme fatigue, insomnia, depression, anxiety, and debilitating physical symptoms that made day-to-day life difficult. Some days, simply getting through the day felt like an achievement, as she struggled to adjust to a life she never expected.
She also faced misunderstanding and discrimination when trying to rebuild her career. Despite being fully qualified, opportunities would disappear after disclosing her epilepsy. It became clear that many people saw her condition before they saw her capability, leaving her feeling shut out of the independence she had once taken for granted.
Her diagnosis also deeply affected her personal life. Her long-term relationship ended, and she lost close friendships during one of the darkest periods of her life. Emma describes this time as not only learning to survive epilepsy, but learning to survive everything it took from her. Despite this, she went on to build her own business and use her experience to advocate for others, finding strength and a more understanding community.
Emma turned to Epilepsy Action when she needed support. She was able to find clear and quick information that she needed from the website and found that she felt part of a real community through engaging with the charity’s social media.
Emma decided she wanted to give back, and has fundraised for the charity over the past couple of years, with a highlight being taking part in National Doodle Day.
This summer, Emma is taking part in Miss GB Surrey, where she will be representing Epilepsy Action.
As we cheer Emma on this journey, here’s some awesome facts about her, and her time supporting Epilepsy Action, capturing her passion about art and doodling, campaigning and raising awareness.
1. Founder of By Emma Dearling
Despite all the hardships, Emma feels epilepsy shaped her into who she is today. When Emma was finding it hard to find work due to discrimination, she decided to become self-employed as an illustrator – this was the beginning of ‘By Emma Dearling’.
Her art has become a way to express herself, advocate for people with epilepsy and help others feel seen. Illustration became a way for Emma to process her epilepsy, which she spoke to BBC bitesize about earlier this year.
2. ‘If I Told You’ campaign
In the summer of 2025, Emma took the leap to share her story with the world. Joining Epilepsy Action’s ‘If I Told You’ campaign, Emma’s story was picked up by local newspapers in her home town of Surrey.
Emma opened up about the difficulties she’s faced during her journey with epilepsy, the stigma and misunderstanding that comes with the condition, and the painful end to a long-term relationship after her diagnosis. Emma’s story even received attention of a national online news outlet.
3. Don’t Take the PIP
Emma was a supporter of Epilepsy Action’s Don’t Take the PIP campaign.
4. Book feature
Emma was part of the book ‘Beyond the Ordinary’, in which she shared her experience of living with epilepsy.
5. National Doodle Day
Emma has doodled for Epilepsy Action for two consecutive years, and has raised over £100 for the charity. This year, Emma was invited to attend Epilepsy Action’s National Doodle Day Event in London, and was amongst the guest speakers on the night.
Emma’s speech was incredibly emotional for her, and many guests in the room. She sees it as a turning point in her epilepsy journey, and made her even more determined to raise awareness for the condition and Epilepsy Action.
Emma is a keen fundraiser for the charity, because of the difference they’ve made. As well as National Doodle Day, Emma has completed a ‘Tough Mudder’ challenge raising £495 for Epilepsy Action. This year, she’s fundraising once again, through her Miss GB Surrey appearance. Miss GB often have allocated charities, which participants are recommended to fundraise for, but Emma was determined to highlight epilepsy as a condition and raise money for a charity close to her heart.
Fundraise with us
Inspired by Emma’s story? Find out how you can fundraise for Epilepsy Action.