Anne and her daughter Roisin – who is also an autistic person - have shared their experience of epilepsy, when epilepsy suddenly became part of their lives in 2023…
The month of March in 2023 is when epilepsy came into Roisin’s life like a wrecking ball. It was 5.30 in the morning and completely out of the blue.
The ambulance was called and after the first seizure, she went on to have another 3 seizures during this time. We spent 4 days in the Hospital where she had a series of tests.
The MRI was clear and so was the CT scan - things were looking hopeful until she had the EEG. This test which took a 30-minute snapshot of her brain unfortunately showed seizure-like activity, which covered her whole brain and as a result, Roisin was diagnosed with Generalised Tonic Clonic Epilepsy.
Roisin does not remember any of the seizures she has ever had (it’s probably her body’s way of protecting itself). Still, it has had a ripple effect on the family, particularly her siblings. We all wish we could sweep this epilepsy business under the carpet and pretend it never happened, but it's here - Roisin has it for life and we will make sure we do everything we can to keep Roisin safe and supported.
Roisin has never complained and just gets on with things; she is the most incredible person I know and shows us every day to follow your dreams. We are still learning things about epilepsy every day. One thing we can say to any newly diagnosed person or anyone going through a rough time, this storm will pass.
Roisin’s has also shared her experience of life with epilepsy from her perspective...
When I developed Epilepsy, I was sleeping in my bed not knowing what was about to happen next.
I was an ordinary seventeen-year-old girl, going on eighteen when I had my first seizure. I lay there not knowing I had developed epilepsy or that I had a seizure. The only clues that something new and unfamiliar had happened was the blood on my lips and the bite mark in my mouth.
In the hospital I was sitting on my bed thinking I would never achieve my dreams of becoming an Author, but little did I know, that was just my fear talking.
When I was told I had epilepsy, yes, I may have been afraid of it at first but that was because at the time I didn’t know what It meant. But over time I have gotten used to it, because now I’m twenty-one and still achieving my dreams.
I have published three books since my diagnosis and I’m going to continue fulfilling my dreams – I would say to anyone else who has been diagnosed with epilepsy, if you can dream it, you can do it!”
Thank you so much for sharing your experiences of epilepsy Anne & Roisin – we know it will help other parents and people living with the condition.
Further Information
- If you need any information or support about epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the ‘Our Local Services’ section of our website
- To learn more about Roisin’s books, you can follow her by visiting her Instagram page
- You can read more about Roisin’s third release supporting the work of Epilepsy Ireland by visiting the ‘News’ section of our website
- To learn more about epilepsy and autism, visit the ‘Epilepsy & Autism’ page on our website