My name is Lucy and I am 24 years old, I have lived in Crowland, Peterborough, Lincolnshire ever since I was born; it’s a beautiful historical town.
I currently live with my parent's and my niece and nephew. I have a few hobbies including reading books and adult colouring books which have both been a coping method since the beginning of my epilepsy. I have also recently started the process of moving out into independent living.
Life before the epilepsy was what you'd expect from any child at 9, I went to school where I was an A star pupil and I had many friends and loved taking part in sports and outdoor activities. I loved the independence I had and achieving all of my milestones regarding my education.
My first seizure was the 16th of August 2004, I was 9 years old. It had all started with sudden headaches without warning along with sickness and dizziness for about two weeks before that. I didn't get a solid diagnosis for 4 years of what exactly had caused these symptoms to start. A specialist at Great Ormond Street Hospital in London finally diagnosed me with a rare inflammatory brain disease called Rasmussen’s encephalitis, where each seizure took a great toll on me. Rasmussen’s still isn’t fully understood, but it is generally accepted by medical specialists to be an autoimmune disease that causes someone’s immune system to attack one side of a person’s brain. This side of the brain or “hemisphere” becomes inflamed, leading to all of the symptoms I’d been experiencing.
Medication did not control the seizures, though I tried many different types, and we soon reached the point where I was having over 200 seizures a day.
My life changed dramatically, I lost my confidence and my independence was reduced, I was scared to go out and my parents were protective. School became difficult and my grades dropped. At first, I didn't really like my parents being more protective, until my seizures increased, and they worried more. I understood then why they worried; it was a scary time... the unknown. However, at times especially as I became a teenager, I became more and more frustrated at how over-protective they had become.
However, I didn't let this change my outlook on life, I stayed positive and faced each seizure as a battle i knew I'd eventually win. I never questioned why me, because why not me? It doesn't mean I didn't get frustrated because trust me I did and often.
My first brain surgery was the 25th of September 2005. It was a straightforward biopsy though it was the first operation I had ever had so I was terrified. However, it went well, and I left hospital 3 days later with a headache and 25 stitches.
I had my second brain surgery in 2008, a right frontal lobe resection, which unfortunately didn't work for me, it just changed the pattern of my seizures. I was scared at first, I had only come out of an induced coma a week previously. But the NHS staff were amazing and put me at ease... I was fine, “keep smiling and be brave” I told myself, “you've got this!”.
But three years passed, and the seizures got even worse. The professor of pediatric neurology in great Ormond Street that I was under; suggested I had another, more radical brain surgery, known as a hemispherectomy; a disconnection of an entire side (hemisphere) of the brain. I agreed and started the process emotionally and physically; it was a big step, I would lose the use of the left side of my body, as it was the right side of my brain they would disconnect. I was, of course, incredibly nervous of this so I backed out initially and I developed short term memory loss and became weaker. My seizures also continued to get worse, I developed some left sided weakness anyway due to the brain inflammation that was also gradually getting worse.
I started to feel on edge at school and had a lot of time off due to having spent long periods of time in hospital. I felt that no one understood what I was going through…
But looking back now, of course they didn’t; no one did not even the medical professionals at this stage. Secondary school was worse my friends started to form different friendship groups and I was soon left behind. After a year I was removed from school where I was labelled a health and safety risk due to an incident where the air ambulance had to be called out to me after a prolonged seizure.
Following this I had two years of home schooling for years eight and nine and during this time I was receiving therapy and trying to get used to the idea of a new normal. I was then advised to attend a specialist course to build my confidence where I would have full time 1:1 support for my epilepsy and learning, it affected many aspects of my day to day life at this point. I also decided I wanted to learn more about children and childcare for a career and so embarked on a course, however my worsening seizures forced me to reevaluate my earlier decision.
After a year of college, the surgery was my safest and only option left, I knew I had to do it, take back my life... but I was scared. I had my pre op assessment at young epilepsy in Surrey (known at the time as NCYPE, national Centre for young people with epilepsy). This was to see various therapists and doctors to gauge where I was prior to surgery, so that my progress could be documented.
March 29th, 2012, I had the surgery and 2 weeks later I went back to Young Epilepsy in Surrey for 12 weeks of intense rehabilitation, and what an amazing experience it was! The surgery worked, my seizures stopped, and I got my life back. Rehabilitation was a lot of hard work, a lot of physiotherapy and speech therapy, and a lot of effort from me and the staff.
This transition was huge, but I adapted and received a lot of support. Once recovered I returned to education completing my diploma in health and social care and going on to finish another qualification in early years learning. I now am trained as an early year’s assistant (although I work with individuals with dementia) and I have a wide friendship circle. I am now writing my life story regarding my epilepsy
After 2 years my seizures did slowly return but not each type. Hospital now say they are non-epileptic most of the time and I can live with that.
I have been on an incredible journey and I have met some amazing people.
I have epilepsy, epilepsy doesn't have me!
