Living with Epilepsy

Living with Epilepsy
13 February 2017
On International Epilepsy Day, 13 February, we take a look at what it means to be diagnosed with Epilepsy, and pick apart some myths around this neurological disorder.

What is Epilepsy?
Because Epilepsy can’t be easily spotted when you look at someone, it can be a little difficult to understand. Simply put, however, Epilepsy is a neurological disorder that can cause a person to experience seizures. These seizures are caused by a ‘misfire’ of, or abnormal electrical discharge that takes place in the brain. These seizures are very often triggered by a set of circumstances, but each person has different patterns and triggers. You can learn more about the possible triggers behind seizures here.  

International Epilepsy Day
This year, the theme for International Epilepsy Day focuses on “more than seizures”, which focuses quite well on the truth that living with Epilepsy is not impossible, nor something that can hold you back. According to Epilepsy SA, 1 out of every 100 South Africans have Epilepsy, with more than 50 million people across the world having been diagnosed as such. Many people have their Epilepsy and their susceptibility to seizures controlled through medication, but some do not: the decision to take medication to control Epilepsy is made between a doctor and their patient, and every case is different.

I’ve been diagnosed with Epilepsy – Now What?
If your doctor has diagnosed you with Epilepsy, it can be significantly troubling. Remember, however, that Epilepsy can be controlled and does not define you. As Johannesburg-based writer, Louise Ferreira tells us:

“I was diagnosed with absence (formerly petit mal) epilepsy shortly before I turned 17. While it was scary to hear, it was a relief to have a diagnosis — I’d been having seizures for a year without knowing what was wrong with me. I’ve been on medication for 12 years and will likely have to take it for the rest of my life. In my early twenties, I resented that, especially because I was still struggling with some side effects, like weight gain. But I’ve made peace with that, and I am grateful every single day that I can lead a normal life. I can drive. I can work on a computer. I can earn a living. No one knows that I have epilepsy unless I tell them. Over the last decade or so I have had a couple of seizures, including tonic-clonic (grand mal) seizures, but this has always been under times of severe personal and professional pressure. Stress is my biggest seizure trigger, with sleep deprivation a close second. It’s important to remember that it’s not only the medication that keeps your epilepsy under control. For example, I must ensure that I sleep enough and that I have ways to manage my stress levels. I also have to be careful with my intake of stimulants and depressants, such as caffeine and alcohol. Having epilepsy has certainly affected my life, sometimes negatively, but I have learnt to live with it quite comfortably.”

Banishing Myths Around Epilepsy
Perhaps it’s because the disorder is not easily noticeable, Epilepsy is often shrouded in mystery, and many myths surrounding it have spread over time. We can absolutely confirm, however that, the following are NOT true about Epilepsy:

  • People experiencing a seizure could swallow their tongue – it’s not physically possible to swallow your tongue.
  • You should restrain someone who is having a seizure – this is incorrect, and could cause further harm. If you spot someone having a seizure, do what you can to prevent them from injuring themselves and wait for the seizure to run its course.
  • People with Epilepsy are disabled and cannot work – this is untrue. Epilepsy can be controlled through medication and treatment, and a diagnosis does not mean you are disabled.
  • Children diagnosed with Epilepsy are doomed for life – this is entirely incorrect. In fact, some children appear to grow out of Epilepsy as they grow older.

What Do I Do if Someone has a seizure?
If you are diagnosed with Epilepsy, it’s helpful to inform your friends and family, so that they know what to do if a seizure occurs. This post from Epilepsy SA is a helpful resource.  

LifeDoc Can Help
LifeDoc™ is here to help. Now available for download as an Android app (with iOS coming soon!), LifeDoc™ helps you take charge of your personal health information, while making it easier to keep track of appointments, schedule those check-ups and securely store your personal health records. Register here or like the LifeDoc™ Facebook page for regular updates. You can also stay on track with LifeDoc™ developments on Twitter.