Better futures for young lives with epilepsy and associated conditions

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Millie's story

Millie was diagnosed with epilepsy as an infant just before her first birthday.

She had not been unwell and was asleep in her cot when she had her first seizure. It lasted for a very long time and was quite severe.

Taken to hospital by ambulance, it was found that during the seizure she lost the use of the right side of her body for a period of time and a Phenytoin infusion was started to try and control it.

I was sent for various tests to confirm the diagnosis and went to Guys and Thomas’s for an MRI. It was confirmed that I had Tuberous Sclerosis Complex (TSC) and that I had lesions on my brain that was causing the epilepsy.
Millie

She now has roughly 4 or 5 absence seizures a month and they normally occur due to tiredness or illness. These are controlled with three different medications, but are always under review as the goal is to be seizure free.

I am lucky enough to get a warning before I am about to have one of my absences so I am always able to get myself in a safe situation or with someone who can help me."
Millie

When she was younger she was bullied and found it hard to deal with.

During a drama lesson I had a seizure and it scared everyone because they didn’t know what was happening to me. I started being referred to as ‘scary mary’.”
Millie

Now though, epilepsy does not have a drastic effect on her day to day life. She attends mainstream school, although she is unable to drive as she must go have two seizure free years first.

However, she has to monitor how much alcohol she drinks at any one time:

I find this the hardest to deal with as being a very social person and having a very large group of friends I enjoy going out to clubs or pubs with them. I have noticed that the amount of alcohol I drink has a direct impact on the probability of me having a seizure the following day.”
Millie

Millie has had increased absences from school following seizures or attending hospital appointments, not to mention the continual adjusting of medication, which have been unsettling at times.

Exams have always been difficult for me. Stress is one of the triggers for my seizures and so exams can lead to an increase in the number of seizures I have which can in turn lead to lack of sleep. It’s a vicious circle.”
Millie

Millie hopes to complete paediatric nurse training and having epilepsy has influenced my decision to go into nursing.

The support that Millie has had from nurses and healthcare teams when in hospital has been outstanding and she would love to give something back and have that same effect on other people.

I was diagnosed with the condition at a very young age so look at my epilepsy as a part of me, like telling someone my name is Millie. If you were diagnosed in your teenager years it would be a big shock and would also be a big fright as your life would change without any warning.

Don’t let anyone tell you that you are different to them or not as good as them at anything. Look at your condition as a reason to show people that you are just as good at them at whatever hobby you enjoy, even your education.

I used to always think about how people used to bully me and make me feel upset but I’ve now learnt how to turn that view into a positive as now I look at bullying as a way of learning who your true friends are. They are the ones who stick by you through the bad days and the good days and the ones who stick by you during a seizure and don’t run away."
Millie

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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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