Thank you for visiting my JustGiving page! I’m running the Royal Parks Half Marathon on October 11th for Epilepsy Society, the only UK charity funding medical research into epilepsy as well as providing support, advocacy and care for individuals living with epilepsy and their loved ones. Anyone who knows me knows I am not a runner by nature, so training over the very hot summer has been quite a challenge!! Any donations, big or small, would be so appreciated and go towards a wonderful cause.

Harvey and I were both 19 and in our first year of university when he had his first seizure. It was terrifying. Neither myself nor any of our friends knew what was going on or the right thing to do, just like the majority of people who have never been told how to help someone in the event of a seizure. A very stressful period of testing followed for Harvey and his family, resulting in an epilepsy diagnosis.

There are up to 21 different types of seizure which affect people in different ways, but Harvey has tonic-clonic seizures which involve excess electrical activity across the entire brain. Tonic-clonic seizures cause people to suddenly lose consciousness and control of their body, and causes all of the muscles in the body to contract and relax. These seizures can put people in a lot of danger and are very taxing on the body. They can also cause large gaps in someone’s memory, which is obviously extremely distressing and disruptive for people with epilepsy and their loved ones.

Once someone is diagnosed, the difficult process of trialling anti-seizure medications begins. This process involves a high amount of trial-and-error as there is little understanding of how each individual’s epilepsy will respond to different medications and dosages, if it does at all. This makes the whole process extremely lengthy, stressful and difficult. Drug-resistant epilepsy affects around 3 in 10 people with epilepsy, meaning their seizures will remain uncontrolled without more extreme interventions like surgery. For people whose epilepsy does respond to drugs, there can be significant side effects impacting things like cognition and memory.

Despite making significant lifestyle changes and trialling different medications and dosages, Harvey's seizures are still uncontrolled. When someone’s seizures are uncontrolled, they can experience huge disruptions to their daily life, memory and cognition, and are at risk of hospitalisation due to seizures and seizure-related injuries. Uncontrolled epilepsy significantly increases the risk of Sudden Unexplained Death in Epilepsy (SUDEP), suicide and accidental deaths like drowning. Living with uncontrolled epilepsy is extremely anxiety-inducing and impacts all areas of life, including preventing people from being able to drive.

The dire need for improvements in epilepsy treatment is a key reason why I have chosen to fundraise for Epilepsy Society, as they are the only UK charity conducting genomic, neuropsychological and neuropathological research into improving epilepsy treatment. Their ultimate aim is to develop personalised treatment for individuals with epilepsy and incorporate genomic diagnosis into NHS epilepsy treatment so that seizures can be controlled as early as possible, giving people their safety and independence back.

In addition to medical research, Epilepsy Society provide vital advocacy, training and wellbeing support for individuals with epilepsy, their loved ones and health professionals. Individuals with epilepsy experience much higher rates of mental health problems and are likely to experience big disruptions to their social and professional/educational lives. The support provided by Epilepsy Society is essential for people who may be feeling isolated, anxious or depressed. Epilepsy Society undertake vital advocacy work for individuals with epilepsy, tackling issues like national medication shortages. It is so important that Epilepsy Society can continue to support people affected by epilepsy and advocate for their safety and rights.

I know firsthand how scary and anxiety-inducing it can be when someone you love has seizures, and have seen how much seizures and epilepsy medications can affect someone’s daily life, memory and mental health. I hope we can look forward to a future where no one’s life is endangered by epilepsy and where no one is held back by their seizures. Please donate if you can and keep your fingers crossed for me crossing that finish line!!

£20 could help to ensure that someone who desperately needs to talk about their epilepsy can call Epilepsy Society’s helpline.

£50 could help forward Epilepsy Society’s world-leading research projects, leading to more accurate, personalised treatment.

£60 could prepare tissue samples for microscopic analysis, aimed at reducing Sudden Unexplained Death in Epilepsy (SUDEP).