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Sheila, 33, UK

Hello, I am a British Indian. I was diagnosed with Epilepsy since childhood; I was about 7 years old and I am now 33.

When I was younger I did not have any knowledge about my illness, which was generally not talked about. I remember attending hospital appointments, although I cannot remember much regarding what was talked about. I also remember attending hospital for tests and scans.

Thinking back I remember some of my seizures. When I was younger I think I mainly had seizures at night or during sleep. I used to fall from the bed to the floor. It would sometimes make me unconscious. As I got older (childhood to teenager) I started becoming more aware of my seizures. I think I mostly still have them at night, which made me fall from the bed to the floor. My eyes use to flicker quite regular, at times I used to be aware of this, other times I would not know. But I remember my family sometimes asking why it was happening. But I did not know the reason.

I noticed I would start to get an 'Aura' before a seizure would happen. I would feel tired, sometimes unwell or even normal. After my seizures I would be tired, sometimes confused and not knowing what has happened.

In general I never discussed my illness socially i.e. school, friends, etc. I do not think my teachers knew about my Epilepsy; although I am not entirely sure.

Since early adulthood, it was then I have gained more knowledge about Epilepsy in general. I would say most of my knowledge has been gained from the internet. When i was younger I do not feel Epilepsy was talked about as much as it is today and various services was not shared with me by health professionals, which was not very helpful.

I am pleased to say I am now much more aware of my illness and the various services which are available. Since having my illness, my parents have always been there for me and have looked after me.

I understand how important it can be to talk about a long term health condition, to share certain information and/or details with not only health professionals, but also family, relatives, friends, educational professionals, employers etc. During an emergency it is some of these people who can improve and save your life.

I now aim to actively raise awareness online & offline and progress Epilepsy UK.

Contact details:

Facebook: Epilepsy UK

Twitter: @EpilepsyWM

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