Better futures for young lives with epilepsy and associated conditions

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Amy's story

Now aged 24, Amy was diagnosed with epilepsy in 2002 at 15 after a teacher grew suspicious about her behavior. The teacher thought something wasn’t right and suggested she seek medical assistance.

Throughout secondary school I was hardworking and attentive. One day it was noted by a teacher that I wasn’t as attentive as usual when I didn’t respond to my name three times. As a result of this out of character behaviour it was suggested that I see my doctor.
Amy

Amy was referred for an EEG and MRI. Absence seizures were diagnosed although she has subsequently gone on to have myoclonic and occasional tonic clonic seizures.

The diagnosis was hard for my family. None of my other relatives has epilepsy. It took a while to get our heads around it and understand what it was and how it might affect me in the future. I was born six weeks early so we wondered if that might have contributed to anything but doctors couldn’t be certain. Whilst dealing with the diagnosis, and since, I have had lots of support from friends and family which has really helped me cope.
Amy

Although Amy has had supportive friends and relatives, she has occasionally found herself feeling quite isolated.

Within society and the community at large there isn’t a great understanding of epilepsy. That can make you feel isolated.
Amy

Epilepsy had an impact on Amy’s education. Stress affected her performance in exams and in subjects where she was predicted to get A and B grade A Levels she in fact achieved D and E grades. This didn’t stop her fulfilling her ambitions, and she went on to study Early Childhood Studies at Roehampton University in London before going on to work as a nursery nurse.

Commenting on being diagnosed with epilepsy, Amy had this message:

It is hard when you are first diagnosed. You can feel low; like life won’t be the same again and that there are now so many things you shouldn’t do. But reaching out to medical staff, support groups and epilepsy specialist nurses can ease this. Don’t bottle your thoughts and feelings up, talking to family and professionals helps. And remember you are not alone. You’re not necessarily going to feel like this forever and it does get easier.

There is support available from medical staff and support groups and you should make use of it. Talking to other people will help
Amy

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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