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Five Peer 1 peers have decided to take on the 100 mile bike ride around London in order to raise some money for Epilepsy Action. Why? Here is Emily to explain.

My name is Emily and I have epilepsy.

I want to make something clear from the start, I am not epileptic, however, I do have epilepsy. What is the difference, you ask?

Me.

I am the difference. I am not my illness and I will not be defined by its stigmas or restrictions.

However, in some strange way, I guess that I should also be grateful to my illness. Not for the days where I could barely lift my head from the pillow, or the numerous side effects that I have experienced from the many different medications that the doctors have prescribed for me, but for the person that I grew into.  Epilepsy is a part of me. I like to think that I am a strong, kind, intelligent person and if I didn’t have epilepsy, then I would be a different person, who knows what she would look like?

I have been asked to write my story for you… something I have never done before. Although I am very open about my illness there are also experiences that have stayed silent for years and are only really known by one other person; my Mum. Those of you who know me now, hopefully, think of me as a healthy, happy, independent person. Something that at one stage would have seemed an impossibility.

At the age of 11, at a friend’s birthday party, I collapsed and had my first seizure. My only real memory of this is being distressed at the sensation of traveling backwards in an ambulance! The doctors tried to calm my parents, everyone can have 1 seizure. But, when I had another seizure while on a school trip (punching a teacher in the face when she tried to restrain me!) they realised something more was happening.

By the time I was 14, the epilepsy has developed to such a level that I was having 5-10 seizures every day. School was almost impossible. High levels of medication meant that I could barely stay awake; I gained huge amounts of weight, started to lose my hair and had a weakened immune system. This led to me suffering from other illnesses including Scarlet Fever where alongside seizures; I didn’t eat for 2 weeks.

The strain that my illness put on my family was massive; my Mum gave up work to care for me and had to watch helplessly as the seizures continued. She had to do things for me that she wished I could do myself but rather than causing embarrassment, she just got on with it. We have built a strong friendship and we speak daily.

A neurologist named Dr Thomlin was our saviour. At 16 my consultant finally realised that continuing to increase the dosage of medication was not the solution and referred me to a specialist hospital. The medication I had been on (Epilim) is the cheapest epilepsy medication available. Dr Thomlin wasn’t as concerned with budgets as treatment and stopped the Epilim, moving me onto a new medication.

Within 3 months I was completely clear of seizures, and this lasted for 3 years.

I managed to pass my GCSEs which felt seemingly a miracle after missing most of the 2 years of school. I was also able to go to Sixth Form and get 4 A-Levels. My Mum went back to work. My family was able to go back to normality.

I remember my Dad’s speech at my wedding. Neither of us could hold back the tears when he recalled their fear that I would never be able to lead an independent life and now here I was, married.

I accept that there are things that I will never be able to do in my life – drive, scuba dive and other things that hurt a little deeper. But thanks to the support and treatment of epilepsy specialists, my family and friends, I have been able to do so much and I have so much more that I still plan to achieve!

Every day is an adventure if you allow it be. What will you do today?

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Photo: Fred Taylor-Young