Danielle's story

My name is Danielle and I am 20 years old. My epilepsy journey started on the first day of secondary school by getting taken off in an ambulance to the children’s hospital after my first  seizure in Spanish class. After a few days of doctors’ examinations, MRIs and EEGs, I was diagnosed with tonic clonic epilepsy. I was in and out of hospital all the time at the beginning but I didn’t mind because I was lucky that I had the perfect doctor. He kept me informed of what was happening with my illness as it got better and worse. I was very lucky and after mutual, superb decisions, I can say that I am five years seizure free and having the best year of my life doing an Erasmus in Austria.

I will admit that at the age of 15 I felt like I didn’t fit in in the children’s hospital with screaming kids in the waiting room. But I was lucky that in my eyes, I was treated as an adult once I set foot in the doctor’s room. I have to admit I was very panicked and had a lot of anxiety about going into the adult hospital as I felt like I wasn’t ready. No one had told me about my doctors. No one had shown me where the hospital was or what it looked like on the inside. I had no idea how different the system was in comparison to my previous hospital.

My first impression of the adult hospital was that it was very fast paced, like a race with little time for the relaxed chat which I was used to. They ask you a lot of questions which I think people should be prepared for. I wasn’t ready for the information overload they would give and at 17 I did not know I would be expected to know everything.

I am on Epilim Chrono which can have side effects for women and babies in pregnancy and I felt overwhelmed by the information they were giving me. I also had lots of questions I wanted to ask about travelling which I feel I didn’t get time to ask. The pace and difference in approach in adult hospitals definitely takes times to get used to but once a person is prepared and knows what they are walking into, everything will be fine.

I’ve had a chance to review this booklet and there are a number of things I really like and wish I had access to a few years ago when I was a teenager. I think that it is a great idea having an introduction to an explanation of the concepts of epilepsy as many people either don’t know or don’t remember everything. I also think the tips for medication are a great idea and I wish I had known them when I was younger as they would have really helped me. I also think that the links to websites and booklets is great as there are a lot of times that I have read something but had no source to find more information about these areas which are so interesting.

The section “Just for Girls” in the new Epilepsy Ireland teenage booklet is brilliant as this area is often ignored and was definitely spoken to me a lot more vaguely than other topics. I know many people who rarely talked about it with their doctor. The How2tell app sounds like a great app that people will be interested to learn about as this is another thing I wish had been around when I was younger. The link to the STEPS programme is done very well, specifically if parents are worried about their children. The activity sheets will really get young people engaged in the topic as they feel like they have a part to play and is a great way to get them to research their own illness. I would have loved to have done it when I was younger. All the important bits are included in the checklist too!