Newly diagnosed with epilepsy

Getting diagnosed with epilepsy can be a frightening, lonely, and uncertain experience. However, Young Epilepsy has resources, information, and guidance to help you understand your condition better and look forward with positivity and purpose. 

From our community pages to our youth groups, epilepsy information pages to real life stories, we are here to help children and young people diagnosed with epilepsy.  

Support for young people newly diagnosed with epilepsy 

Young people with epilepsy are at the core of everything we do and we are passionate about making you feel understood and ensuring that your voice is heard.  

Combining your experiences with input from researchers, medical professionals, educational experts, and families of those with epilepsy, we have developed resources for young people living with epilepsy from infancy to adulthood.  

So that you can find resources and information most applicable to you, we have categories tailored to different age groups. 

• 0-3 years old 

• 4-7 years old 

• 8-12 years old 

• 13-18 years old 

• 18+ years old 

The Channel 

The Channel is a space for those 13 years old and over where you can explore topics from the community that are important to young people with epilepsy. You can use this area for guidance and submit your own questions for discussion. 

On the Channel, you can find information and resources on: 

• Mental health and wellbeing 

• Your education 

• Moving to adult healthcare 

• Work and careers 

• Travel 

• Going out 

Virtual youth groups and other events for young people with epilepsy 

One of the best ways to understand and manage your epilepsy is to connect with other young people going through the same thing. We have different virtual youth groups and opportunities for young people to socialise, support each other, and just have some fun. 

Epilepsy and Me  

Our Epilepsy and Me virtual support groups provide a chance for young people to talk openly about their epilepsy with other people who get it. Separated into three age groups and running every month, these groups are a great way to find community and share tips about living a full life with epilepsy. 

Virtual Youth Clubs 

Being newly diagnosed with epilepsy can be overwhelming, and you may want some time to think about literally anything else. Our Virtual Youth Clubs provide an opportunity to hang out and socialise with other young people with epilepsy without your condition being the focus. 

These groups allow you to explore your interests, make friends, develop new skills, and improve your overall wellbeing. 

What’s going on? 

We have in-person events for young people with epilepsy to meet each other in the real world, form community, and have some fun. Keep an eye on our ‘What’s going on?’ section to see upcoming events in your area. 

The Youth Voice Network 

The Youth Voice Network is community of young people with epilepsy, for young people with epilepsy. Any 13-25 year old living with epilepsy is welcome to come and share their story, get involved in projects, and help lead the direction of Young Epilepsy. 

Being a member of the Youth Voice Network can help you turn uncertainty into action, fear into leadership, and loneliness into community.  

Information about epilepsy 

When you are newly diagnosed with epilepsy, you are likely to have a million questions about your condition. Though you should always talk to medical professionals for how to manage your seizures, we have plenty of information about epilepsy to help inform. 

Learn more about: 

• The causes of epilepsy 

• Diagnosing epilepsy 

• Epileptic seizures 

• Common co-occurring conditions 

• Epilepsy syndromes 

• Epilepsy treatments 

• SUDEP 

Watch our videos

Young Epilepsy has a range of videos that can help you better understand your epilepsy when first diagnosed. 

Find more information on our Youtube Channel

Real life stories 

You are not alone, and our real life stories can help you understand the experiences of other young people with epilepsy.  

When you have just been diagnosed with epilepsy, you are at the beginning of your journey, so it can be helpful to find inspiration, tools, and community through those who have more experience with their condition. 

Get involved 

Sometimes, the best way to alleviate anxiety is through action. No one can convey the experience of a young person with epilepsy the same as a young person with epilepsy. At Young Epilepsy, we have countless ways to get involved to raise funds and awareness for young people with epilepsy, which can also help you find confidence, purpose, and community. 

Of course, this path is not for everyone. However, keeping up-to-date with what your peers are doing shows you how an epilepsy diagnosis need not limit your passion or power. 

Information for parents and carers 

If you are newly diagnosed with epilepsy, it’s likely that your parents or carers will have as many questions and fears as you. Our parents and carers pages can help provide them with tools and resources so you can stay informed and face the challenges of epilepsy together.