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#OnTopOfEpilepsy

There's more to epilepsy than seizures. Let's get on top of it.

Join our #OnTopOfEpilepsy campaign today! Help us raise awareness of the connection between epilepsy and mental health and call on the NHS to integrate mental health support into children's epilepsy care.

Campaign with us

Why is the #OnTopOfEpilepsy campaign happening?

Children and young people with epilepsy are four times more likely to experience a mental health problem than their friends. Many people like Daisy are struggling to get the emotional support they need, with only 15% of children's epilepsy clinics offering mental health support.

"My mental health also affects my epilepsy. Stress triggers more seizures, I don't eat when I feel down and that affects my epilepsy which then affects my mood. It's a vicious cycle." Daisy

The mental health difficulties these young people experience often have more of an impact on their lives than the epilepsy itself. But with the right help and support, their mental wellbeing can be significantly improved.

We want EVERY child to have access to mental health screening and support as part of their epilepsy care.

Young Epilepsy is campaigning for the NHS to integrate mental health screening and support into paediatric epilepsy care. We're working with young people and families to achieve this and help connect young people with the support they need. Help us campaign for better mental health support for children and young people with epilepsy.

Whilst we campaign together, we will also work with young people to create an online mental wellbeing space, with information and advice for young people on the challenges and hopes they might face on top of their epilepsy.

Campaign with us. Help make a change for children and young people with epilepsy Daisy's story Why. The reasons young people with epilepsy often experience mental health difficulties Donate today

Daisy's story

Daisy was seven when she was diagnosed with epilepsy. “My teacher had noticed that I was having ‘daydreams' and suggested that I had some checks”. Her main type of seizures are absence seizures “where I go into a brief ‘trance-like' state of unconsciousness. I spend a few seconds looking into the unknown before coming back.”

Now 18, Daisy reflects that “looking back, I'd like to have known what epilepsy was. At the time, the doctors just told me, “This is what you have, off you go”. When I was first diagnosed, I was terrified. They told me it was a disability. I was heartbroken. I thought none of my friends would like me anymore and they'll think I'm weird.”

Mental health support is just as critical as physical health support for young people with epilepsy, something that Daisy knows first-hand. Being a young person moving through their teenage years, making life choices and experiencing the academic and career pressures of growing up is difficult enough. But being a young person with the fear and worry of epilepsy can make things even more tricky to navigate.

“Epilepsy has affected my mental health quite a lot and I've found it quite isolating. You have this condition, that a lot of people have, but people can't get their heads around it.”

“I always think, what if something happens? I'm already quite anxious, and there's this massive added thing sitting on my shoulders.”

Daisy's experience with mental health support as a young person with epilepsy is dangerously disappointing and it's testament to her bravery that she's sharing her story.

“I've lived with really bad anxiety, depression, self-harm and eating disorders. I've been to see my doctor's numerous times asking them for help. But each time I've been told that I'm “not ill enough” to qualify for help.”

“My mental health also affects my epilepsy. Stress triggers more seizures, I don't eat when I feel down and that affects my epilepsy which then affects my mood. It's a vicious cycle.”

“There should be a support system in place but there isn't.”

Our youth-led campaign OnTopOfEpilepsy, aims to highlight the very real relationship between epilepsy and mental health difficulties. We'll be asking the NHS to improve children and young people's access to mental health support as an integrated part of their epilepsy care.

If you have been affected by any of the issues raised in this story and feel you need support, there is help and advice available

Why

The reasons young people with epilepsy often experience mental health difficulties.

The underlying cause of epilepsy can contribute to mental health problems

Injury to the part of the brain that controls our moods is a common cause of epilepsy. This can lead to difficulties with emotions and mental wellbeing.

Hormone fluctuations, such as during puberty, can affect both an individual's mood and, or seizure frequency.

Feeling confused, sad, worried, irritable, frustrated, or angry in the hours and days leading up to and, or following a seizure is normal.

Sometimes antiseizure medications can contribute to symptoms of mental health problems

Epilepsy medications, known as anti-seizure medications, or ASMs, are important for managing the frequency and length of seizures. But for some people they can also positively and negatively affect mood.

ASMs work by affecting the brain cells and neurotransmitters in order to manage seizures. Therefore, they can also have an effect on our mood and mental wellbeing generally, and can also affect processing speed, leading to feeling frustrated and low.

Living day to day with epilepsy

Living with epilepsy is especially tough for children and young people. Navigating childhood, puberty, the teenage years and becoming a young adult with the peer pressure, academic expectations and life choices these years bring, can be a tricky experience for anyone. Living a young life through the lens of social media can also make things more difficult.

For a child or young person with epilepsy, there's the need to add in living with a condition that can be frightening and unpredictable, as well as often stigmatised. Seizures can happen at any time, including whilst at school, out with friends or when they are on their own. For some, this means a constant anxiety over personal safety and the knowledge that their education and future career may also be affected. It can be lonely too, if family members and friends simply don't understand.

Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy Charitable Trust.
Registered Charity number 311877 (England and Wales)

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