The more I read and learn about epilepsy the more I find that there are still stigma’s attached to the “E” word. Many people hide the fact that they have epilepsy and fear that someone will find out. I REFUSE to keep silent and hide!
I understand why they hide their epilepsy, don’t get me wrong, I am not angry or disapproving of their decision to hide. What I am upset about is that due to lack of understanding and awareness of the truths about Epilepsy people are made to feel they need to hide! In this day and age people shouldn’t fear someone may “find out” they have “E.”
Since my generalized tonic-clonic seizures began, a little less than a year ago, I have learned a great many things about epilepsy. A year ago if you said the word epilepsy I would of thought several things.
- Grand Mal seizure
- Petit Mal seizure
- Go on meds & everything’s fine.
I now know just how wrong I was and how little I knew about the condition!
There are over 30 different types of seizures. Not all seizures effect muscle control (no jerking or convulsions).
One in ten adults will have a seizure at some point in their life. One seizure does not mean epilepsy. Two or more unprovoked seizures mean epilepsy. One in one-hundred people will be diagnosed with epilepsy!
Medication can be a beginning step in the right direction, but it takes a long time to find out if your medication is working. There are over 18 different antiepileptic drugs and some are seizure specific. Sometimes a person may require more than one type of drug to control their seizures (especially if they suffer from different types of seizures). Some people may even require surgery to try to control or stop their seizures. Then, lastly, some people may live their entire life never having control of their seizures.
I learned about something called SUDEP. It’s Sudden Unexpected Death in Epilepsy. This refers to the unexplained death of an individual, with a diagnosis of epilepsy, who dies suddenly, in benign circumstances, without a structural or toxicological cause for death being found at autopsy. I have also learned I am at a slightly greater risk for SUDEP because of my nocturnal generalized tonic-clonic seizures. See: SUDEP – Wiki and SUDEP Aware.
Did you know that seizure related deaths occur at a higher rate than breast cancer deaths? I didn’t. Here’s a few facts for you:
“Research has estimated that approximately 50,000 people die each year in the USA from status epilepticus (prolonged seizures), SUDEP, and other seizure-related causes. SUDEP accounts for 8-17% of deaths in people with epilepsy. Roughly 1 in 100 sufferers of severe epilepsy die of SUDEP every year. For sufferers of mild idiopathic epilepsy (epilepsy of unknown cause), the figure drops to 1 in 1,000 per year.” (Wiki)
Since my first nocturnal generalized tonic-clonic seizure, as I was regaining consciousness in the back of an ambulance, I have felt at peace. The more I learn about “E” the more I feel “blessed with a burden.” Sounds strange huh? Let me explain.
I am a Christian. I believe God can heal me, but I also believe He can choose not to. I believe God is allowing my epilepsy for a purpose. Either to teach me, teach others through me, or both. Whatever the reason, I trust God and I know He is in control. So I feel peace.
The more I learn about “E” the more I want to shout from the rooftops everything I am discovering! I refuse to remain silent and hide. I want to speak out for those who can’t or who are afraid to. Let’s put an END to the silence. Let’s put an END to the stigmas attached to one of the most common neurological conditions!
Think about participating in Global Purple Day on March 26th.
Speak up and don’t be afraid to TALK ABOUT IT!
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