There’s nothing like going through something traumatic to make you want to seize the day…to say this is the day I’m going to start living life to the fullest and start making a difference. You feel motivated and empowered. You feel confident, like you can take on the world and win.
Now what if the traumatic experience hasn’t ended? What if live in fear each day because you’re worried that you will either have a seizure or someone will find out you have epilepsy and never look at you in the same way again.
Now imagine what it could be like if people understood your epilepsy and you didn’t have to feel that fear again. What if you seized the opportunity to make a difference? What if you chose to take part in the second of a series of posts about recognizing something wrong (lack of epilepsy awareness) and helped to make it right?
Problem 1 - lack of epilepsy awareness
There is a stigma associated with epilepsy because people fear what they don’t understand. That fear is even greater when it involves the brain, especially if the brain doesn’t work correctly and causes the body to do things it wouldn’t normally do. Yes, it can look weird…even to other people who have epilepsy, because not all seizures are the same. Sixty percent of seizures only affect one half of the brain (focal seizures) so the symptoms of a seizure are different than those that affect both halves of the brain (generalized seizures).
To get a sense of what it can feel like to have epilepsy, imagine the following:
Problem 2 - fear of discovery
Problem 1 and 2 create a vicious cycle. If you don’t talk about epilepsy because you’re afraid, how can people become more aware of epilepsy? If people don’t learn about epilepsy and the impact it has on your life, how can they become more supportive and want to help?
Breaking the cycle of ignorance and fear could be the factor that ultimately improves the quality of your life. You may be able to develop relationships with people that you never knew you could have. A bonus would be if the increase in awareness resulted in more donations. With more funding, more research could be done. What if everyone with epilepsy made this one small change (conquer fear to increase awareness) and it could result in the discovery of new medications that could help you or someone else to control seizures that could never be controlled before?
More common than you think
Epilepsy is a brain disorder that is diagnosed based on the following:
There are approximately 65 million people in the world who have epilepsy and between 50 to 70 percent of the time the cause isn’t known. In the United States, there are about 150,000 people who are diagnosed with epilepsy each year. About 1 in 26 people will be diagnosed with epilepsy in their lifetime. In Canada about 42 people are diagnosed with epilepsy each day and of those people who have epilepsy, two out of three will have ‘good’ seizure control.
In the United Kingdom (UK) there are currently 600,000 people living with epilepsy. Of those people, only 52% are seizure free. Being seizure free is much different than having ‘good’ seizure control. This difference could be part of the reason why there is a difference in numbers between countries.
If you are surprised by these numbers, keep in mind that the numbers may be much higher. Not everyone who has seizures will seek medical assistance because of stigma and fear.
What you can do
It's your job to break the cycle of ignorance and fear. Seize the opportunity to make your life and the lives of others much better.
Over 30-years of writing experience, about 10 years as a cancer survivor, and a lifetime purveyor of wit and laughter.
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