In November 2021 I got a call saying my sister Jess had had a seizure and been taken to hospital. With no prior experience of them this was shocking and concerning, so we hoped to get answers.

Within a week she had her second one.

By the next week she was having seizures every day.

Within a fortnight - 8 seizures a day.

Within a month - up to 18 seizures a day. Every day.

In addition to the intense seizures and the fear being worked on by paramedics/A&E staff when they reached a critical point, there was the wider fallout. Hours of physical seizures a day meant that her joints would lock, and she would experience temporary paralysis of parts of her body. She had migraines and pain alongside any resulting injuries from falls of seizures that caught her unaware. Potentially the most scarring of all these were psychological trauma, fear and hopelessness of not knowing what was happening or if she would ever get better.

Jess had lost her quality of life overnight. Her ability to drive, to go or be anywhere by herself.

Her mental and physical resilience astounded me. She is one of the strongest, most positive, resilient people I have ever met. I watched as she picked herself up, reassured the people around her, expressed gratitude to the doctors, nurses, paramedics and loved ones – all whilst trying to manage the immense fear she was feeling.

I’ve never been more in awe. But our hearts broke that it was taking so much from her, and cost so much for her to keep fighting.

After months of hospital visits, tests, EEGs, chasing doctors and consultants and referrals, she thankfully received a diagnosis of having Functional Seizures (also known as NEAD) that were a result of Functional Neurological Disorder (FND).

What is FND?

Functional Neurological Disorder (FND) is a problem with the functioning of the nervous system and how the brain and body send and receive signals. Physical and/or psychological risk factors can cause functional symptoms which include a variety of physical, sensory and cognitive symptoms that have yet to be explained by a recognised disease. Functional Neurological Disorders are considered to be multifactorial, which means many different risk factors can contribute to the development of the disorder. The symptoms can cause impairment in quality of life that is similar to and in some aspects worse than other neurological conditions. FND occupies a grey area between psychiatry and neurology that historically has failed to gain the interest of researchers and clinicians. The prevalence and potential reversibility of functional illness have peaked new research interests. New scientific findings are influencing how patients are diagnosed, treated, and creating an overall change in attitude toward Functional Neurological Disorder patients.

There is very little research on FND – many doctors have never even heard of it – leading some patients to go years or even decades without diagnosis or relevant treatment.

Why Donate to FND Hope?

While there is no ‘cure’, a mix of medication, psychological treatment and support/education through charities like FND Hope have meant that Jess – and us – have been given just that. Hope. 

Whilst she has clocked in over 2,000 seizures now (told you – superwoman), she has been able to go back to work, to reclaim some of her independence and to start to understand how to combat the underlying factors that caused the condition. She is doing extraordinarily well and has even started to experience seizure-free days, something we didn’t believe was possible.

Through the support pages at FND Hope, they welcome each individual into a place where they feel a sense of  belonging. They unite patients and their families with leading researchers and advocate to pioneer a new standard of care for FND throughout the world.

Without fast diagnosis or help, the chances of symptoms of FND like functional strokes, seizures and chronic pain has led people to continue to decline in mobility, health and independence. With the work of FND Hope more people can understand the condition, get diagnosed and be supported through functional neurological disorders.

My Part

On Sunday 9th July 2023 I’m running the Asics London 10k for my incredible sister and to help give the tools we needed to anyone suffering from an FND condition. Please help me raise money to support FND Hope’s work and the absolute warriors who struggle with this condition. My heart goes out to you.

Whilst I’m writing I want to say a massive thank you: To the paramedics, the emergency response centres, the hospital staff and doctors, consultant PAs, medical techs, workers and First Aiders at shops and venues that she’s had seizures in since. Thank you for making each one of these tough moments more bearable because of your kindness, fast-action and compassion for a stranger (and her look-a-like). And a special thanks to Jess’s partner Alex, our family, our friends, colleagues and anyone else who has helped get us to this point!

Jess – I love you and am so proud of you. You inspire me every day <3