Blogs
Here you will find tips, opinions, and info on different topics
Blogs and Stories
Stories
True accounts from real people, giving you a glimpse into their lives and experiences
Waiting for an epilepsy diagnosis
Had a seizure and waiting for answers? An epilepsy specialist nurse shares what to know about staying safe, school, activities and what happens next.
We live our life around epilepsy, but it does not define us
Katie shares how she fought for answers, found support, and helps son Gus live life to the full despite daily seizures and epilepsy challenges.
Every mile is for Henry
After Henry was diagnosed with a rare form of childhood epilepsy, mum Georgia is walking 100 miles to raise awareness and help families feel less alone.
I had to let go of the future I'd planned
When epilepsy changed her dream of a career in musical theatre, Amaya found new strength, support and a different path forward.
"You're always on alert": Lucy and Penny’s story
Lucy shares how epilepsy affects her family and why she worked with Young Epilepsy and SHMA to help young people build confidence and explore their future careers.
What nobody tells you about moving to adult epilepsy care
Moving from children’s to adult epilepsy care can feel confusing and overwhelming. Read real experiences, what the research shows, and what could make transition better for young people with epilepsy.
Frank’s seizures happen at night and so does the worry
Seven-year-old Frank lives with epilepsy and complex needs. His mum shares their struggle to be heard, long nights, and finding hope through support.
What I wish I’d known before complex epilepsy assessment
What I wish I’d known before a complex epilepsy assessment – my experience of intracranial EEG, hospital stays and coping with uncertainty.
I thought I’d have a family by now – but changing epilepsy medication changed everything
Read Lisa’s story about seizure control, sodium valproate and the difficult choices epilepsy can bring around independence and family plans.
Talking to a professional: How to be honest without feeling judged
Speaking up about epilepsy can feel difficult. Read advice from young people on being honest with professionals without feeling judged.