26th March is Purple Day! Why not get involved and celebrate with Young Epilepsy’s handy list of fundraising ideas and activities?

What is Epilepsy?

Epilepsy is a neurological condition that disrupts the normal electrical activity our brains use to communicate with the rest of the body. This disruption causes repeated seizures. An epileptic seizure results from a sudden electrical discharge in the brain that causes changes in sensation, behaviour or consciousness. Anyone can have a one-off seizure, but this doesn’t necessarily mean they have epilepsy. People are usually only diagnosed with epilepsy if they have a high chance of having repeated seizures.

Epilepsy is one of the most common long-term conditions that affects children and young people.

  • Over 600,000 people in the UK have epilepsy – around 1 in 107 people.
  • There are around 103,600 children and young people with epilepsy in the UK (aged 0-24) – that’s around 1 in 200 children and young people.

Symptoms

Each child’s experience with epilepsy will be unique to them. Young Epilepsy provides information on recognising and managing symptoms to ensure the well-being and safety of children with epilepsy.

Children with epilepsy may experience a range of symptoms, including seizures that vary in type and intensity. There are over 40 different types of seizures, some may involve convulsions, shaking, loss of consciousness, staring spells or repetitive movements.

Children with epilepsy may also experience behavioural changes, such as confusion, irritability or difficulty concentrating. Epilepsy can also have a much wider impact on a young person’s life due to the side effects of anti-seizure medication, recovery time from seizures and the social and emotional impact of living with the condition.

Living with Epilepsy

Living with epilepsy as a child can present unique challenges and experiences. The impact of epilepsy on a child’s life can vary greatly affecting daily routines, social interactions and overall well-being.

Bea shared her story explaining: “Epilepsy is a part of me, but it doesn’t define me.” Meanwhile Ruben’s story demonstrates the challenges children living with epilepsy face, and how society often fails to understand that the condition can affect everyone differently.

Treatments

Treatment options for epilepsy may include medication, dietary therapies and in some cases, surgery. These treatments aim to control seizures and improve the quality of life for people with epilepsy. Treatments may differ from person to person. People need to look at their treatment options with their doctor.

Research

Children’s epilepsies can be complex, and the condition is often misunderstood. Young Epilepsy’s research focuses on understanding the underlying causes of epilepsy to enhance diagnosis and treatment, exploring innovative therapies and improving wider support for children and young people with epilepsy. Young Epilepsy coordinate and fund cutting-edge research into both diagnostics and treatments and is a founding partner of a nationwide research collaboration headed by the Epilepsy Research Institute.

Advice and support

Young Epilepsy offer a wide range of information and support for children and young people with epilepsy, parents and carers, schools, and health professionals on their website.

  • For children and young people with epilepsy
    • Making connections with other young people living with epilepsy has proved vital in supporting young people and their families. Young Epilepsy offers virtual youth clubs, a nationwide Youth Voice Network as well as taking referrals for one-to-one support from a team of dedicated Youth Support Coordinators.
    • The SHOUT service provides a confidential crisis support text messaging service for young people with epilepsy who are struggling with their mental health, just text PURPLE to 85258.

Young Epilepsy Frequently Asked Questions (FAQs) also provides answers to common queries and concerns about epilepsy.

*Information provided by Young Epilepsy February 2024.

Epilepsy in childhood can be frightening, isolating and is often misunderstood. We stand up for children and young people with epilepsy. We’re here for them. We campaign for children’s rights. We provide innovative tools, information, and practical support for living everyday life. We coordinate world renowned research into the causes and treatments of epilepsy and deliver cutting edge health services.

You can help create a society in which children and young people with epilepsy thrive.

Together we create possible.