My Story
Everyone’s epilepsy story is unique, and sharing your story helps others know they are not alone.
These are inspiring stories; of being diagnosed, over-coming challenges, fundraising and much, much more. Please share your story too.
I was diagnosed with temporal lobe epilepsy when I was seven years old. My parents never made an issue out of it and I was always allowed to do things that I was safe to do. Until the age of 21, I...  | My name is Andrew, I have a daughter called Maddison who was diagnosed with epilepsy at the age of 2 and she still has seizures at the age of 6. She is currently taking four different types...  Middlesbrough | This is Robyn, she is 4 1/2 yrs old. She is still under investigation for epilepsy after almost 2yrs of having the episodes. It is a bit difficult with her as the specialists strongly...  Llandovery, Wales |
I new zero about epilepsy as a child! As i got to about 19 (1969) my life started to go wrong. I had headaches of a different type, they were so painful i could not go to work or get out of bed....  London | Paul, 52, from Greenisland, Northern Ireland, was diagnosed with epilepsy ten years ago. His wife found him when he was having his first tonic-clonic seizure and had to call emergency services as...  Greenisland, Northern Ireland | Hi, my name is Lauren. I have a wonderful little boy named Albie who was diagnosed with Dravet Syndrome in September 2018 (Just before his 1st birthday). Albie was having lots of prolonged... |
I'm Ojijo .M. Odhiambo from Kenya.Today , i'm going to talk about how epilepsy has affected my education journey.I'm a 4th year student pursuing Mechanical Engineering at The Technical University...  Nairobi - Kenya | Chris and Sam shared their story for National Epilepsy Week 2017 Their story shows how people with epilepsy can be affected by the current benefits assessment processes. This has already...  | My greatest achievement is winning the Challenge Cup in 2005, when Hull FC beat Leeds Rhinos at the final in Cardiff. I’m a professional rugby player for Hull FC. I’m 28 and live in Hull. I’m... Challenge cup winner |
Sezuires began with a bang, 8 in 12 hours remember nothing of it ,apart from soiled clothes then waking in A&E, took year to diagnose. Daily sezuires, gone from Senior Social Worker and...  Pontypridd,wales | ...being elected the MP for Blackpool and North Cleveleys. I am in a unique position of being able to highlight a variety of disability issues, and I hope this means that groups of people whose... Paul is a Member of Parliament | In August 2014, when I was 25, I had a tonic-clonic seizure whilst driving on the M62. Luckily noone else was involved and apart from a few bumps and bruises I was fine. My car, however, was...  Selby |
Roseanna has had epilepsy since she was 21. She has focal seizures that are caused by a scar on the temporal lobe of her brain. Her seizures are mostly controlled by medication now, but she says...  Enniskillen | I am a 37 yr female who at the age of 14 whilst carrying out a weekend job in a clothing store started to get jerks in my arms whilst serving customers. This was particularly bad when I was... Exeter | Planning When I realised things were getting serious between me and my now husband, I went for preconception counselling. I had been on Epilim (sodium valproate) pretty...  |
When I was about 21 I started to have very vivid deja vu; to the point where it repeated in my head for minutes. At the time I was confused but thought, it’s normal everyone gets it. Then it got...  Scotland/New Zealand | One of my achievements as well as recieving my blackbelt which is currently featured on the epilepsy action National Epilepsy Week is starting up the Horncastle Epilepsy Support Group as i will... Horncaastle | Looking back, despite our research, we were quite naive when planning to have our first child. No one was overly concerned that I was taking sodium valproate. At 20 weeks, I had the normal scan -...  |
I was diagnosed at 18 and the cause was unknown until I started retracing my steps. I realised I began having seizures after I started having problems in my relationship. My neurologist said that...  Bury St. Edmunds | I was diagnosed in 1986 with what was then called petit mal seizures. I was put on valproate. At 19 I had 3 tonic clonic seizures and had my medication changed to the then new drug Lamotrigine. A...  Verwood | The moment I knew I was pregnant Surely this can’t be right!! What were the instructions again? Does that blue line really mean…? I was expecting it to take at least...  |