By Lucy Corkhill
26th March 2013
Hi Isobel, thank you so much for sharing your experiences of epilepsy to raise awareness for Purple Day. You discovered you had epilepsy in December 2010 when you were 12 years old. Can you tell us how it has impacted your life?
I thought it would have a bigger impact within my friendship group, but all of them understand, don’t treat me any differently, and are also really supportive at bad times. So, there are only two ways it has mainly restricted me, which are: not being able to shower or bathe without someone there, and not being able to do some unsafe activities. I think the worst one is not being able to bathe or shower, because, being 14, I really want to wash by myself now and have privacy. Overall though, I think me and my family have handled it in a way that means I’m not too restricted from doing things that a non- epileptic 14 year old would be able to do.
Epilepsy is characterised by seizures which can have a huge impact on those with epilepsy and their families. I’ve been reading that there are different kinds of seizures and that they vary in frequency. Can you tell us a bit about your experiences and diagnosis?
I was diagnosed with Juvenile Myoclonic Epilepsy, which people often get around their early teenage years. I’ve experienced Absence seizures, Myoclonic twitches and full Tonic Clonic seizures (the one that most people think a normal seizure is). Unfortunately, my seizures have been very hard to restrain and for the past two years, they have not had a regular pattern for long periods of time, the worst time being when I was getting one every week. Therefore, I’m not sure how different seizures vary in frequency, because my experience of them has been hard to control. However, recently they seem to be getting better and I have been seizure free for the longest period of time since I was first diagnosed.
You’re now on medication to control the seizures. Can you explain a bit about the different kinds of treatment you’ve received and how it has (or hasn’t) helped?
I started off with just Keppra (Levetiracetam), but as the types and patterns of my seizures have changed, my medication has changed too. I now take Keppra (Levetiracetam) and Lamictal (Lamotrigine) twice a day, and the dosage of these two seems to be working. It has taken a long time to get the dosage balanced out to a point where I’ve been seizure free for this long, but sorting out the medication for others can take a much shorter time.
Epilepsy is often shrouded in mystery. What do you think it would be most useful for people to know about epilepsy?
I think the most important thing for people to know about, is what to do when someone has a seizure, especially as it’s not obvious if someone has epilepsy. If someone witnessed someone having a seizure, it would be very important that they reacted in the right way, so the person having the seizure cannot be hurt in any way. Luckily, quite a few of my friends know what to do if I have a seizure now, and that does make me feel much more comfortable about having one with them.
Cassidy Megan founded Purple Day in 2008 to get people talking about epilepsy. How easy have you found it to talk to others about your experiences?
When I was first diagnosed, I was really worried about telling my friends, because I thought they might judge me or think it was strange. But, to my relief, all of them acted perfectly normal about it all, and now I don’t feel embarrassed talking about it to most people out of my friendship group too.
Lastly, are there words of advice you’d like to share with people who have recently been diagnosed?
Just not to worry about it all the time and don’t let it change how you’re living or restrain you from doing things. When I was diagnosed, I think I worried about it too much, but it’s pointless to, as nobody will judge you. Finally, remember that there are many others out there who are in exactly the same situation- it’s not just you.
What to do if someone has a seizure:
Epilepsy Action has comprehensive advice for different types of seizure, including a video
The NHS has some information on what to do if you see someone having a seizure, with a checklist of questions
The Epilepsy Society has a simple and memorable list of ten first aid actions and there’s a video of the recovery position
To find out more about raising money and awareness, visit our Purple Day page. You’ll find plenty of resources there too.
