I was looking at an article from Newsweek recently and it read: "Epilepsy in America takes as many lives as Breast Cancer..... the risk of sudden death is 24 times greater in people with Epilepsy than the general population"
Even I was taken aback by those statistics.
But then when I looked into chat room and post conversations on websites like youtube, people were stating that Epilepsy can't kill anyone who suffers from it, for example one post read:
"It won't actually kill you, unlike what other commentors have said, if you're in a dangerous situation where you have a seizure, i.e. swimming where you can drown or you can hit your head on a table".
The thing that annoyed me most about this comment, was that apart from being false, if an individual threw someone into a swimming pool knowing they couldn't swim and that person drowned, would they get convicted of Murder or at least Manslaughter? Of course they would. For my money, someone who dies from Epilepsy in the same way still died because of Epilepsy. I believe you're preventing important awareness stating otherwise. Not only that, but just having a prolonged seizure itself can cause SUDEP, or Sudden Unexpected Death in Epilepsy, where no external factors caused the death.
The worrying thing was later in the post the individual explained they had Epilepsy. It got me thinking, if people with Epilepsy are unaware of the dangers of SUDEP, how is anyone else going to know about it and more importantly how to prevent it?
I wondered if it conflicted with the positive image of people with Epilepsy being able to live normal lives, work, go out with friends, be physically active, do what they wanted in life etc. The fact is unfortunately, it does - no company for example, would want sued because they had a cupboard in the wrong place, or because they didn't phone the Ambulance quick enough. So it scares people who don't fully understand Epilepsy, into feeling like they are taking a risk employing someone with the condition when they're not.
Regardless of the PR image of Epilepsy being tainted though, it is important to know that Epilepsy can and does kill some of those who suffer from the condition and it's not restricted to certain types of sufferers.
A study in Canada found that: "Epilepsy-related causes of death (which included SUDEP) account for 40% of mortality in persons with Epilepsy" If this is true, then worldwide 20 Million people in the Epilepsy community will die because they suffer from their condition. The thing that scares the hell out of me is that, if the stats are right, out of my 9 friends who have Epilepsy, I'll attend the funerals of 4 of them because of it, unless of course mine came first.
While it might not fit in with the positive image of the condition, it's important to remember 2 major things. Firstly, the person with Epilepsy is still the most talented person you might come across in the workplace, in sport, in the art and music world or wherever it might be, it doesn't stop us from being the individuals we are outside of our seizures. Second, for people with Epilepsy and those around them, be it during a seizure, medically or in daily life, many of these deaths could be prevented through better awareness and the actions they take.
This is why, despite the treatment I normally get after a seizure, dying to go to sleep in A&E when I can't, I'm still thankful to the person who phoned the Ambulance, just incase my seizure caused something worse. It's why I have showers instead of baths and don't swim, why I don't stand next to train platform edges and why I never, ever, leave to go and ride my bike without my helmet.
We can all do something to stop Epilepsy related deaths, even SUDEP is preventable if treated quickly enough.
You could be the passer by who phones the Ambulance immediately. You could be the person who stops a car if you saw someone having a seizure even vaguely close to a road. You could be the medical professional who makes sure the side effects of the medication taken to control the Epilepsy aren't unsafe, even if they do control the condition. You could even be the friend or family member who makes sure suicide never is an option if the side effects of Anti Epileptic Drugs result in severe depression, like the cases of some of those who take drugs such as Keppra.
It takes a certain amount of bravery to live a good and full life if you suffer from frequent seizures. Even I grapple with the question - Is it better to have died because of Epilepsy having had a great life or to have lived spending my life in a padded room?
I hope that because of some little adjustments I can live a great life, without my Epilepsy cutting it short.