I have a bone to pick with the larger epilepsy charities and their blatant propaganda exercises in which they try to ‘normalise’ epilepsy.
"... Epilepsy is not something to be afraid of.
Epilepsy is not something that should stop you living a full and rewarding life.
Epilepsy is not something that should prevent you from achieving and fulfilling your dreams. ...." And so on ...
Really? I beg to differ.
That’s not the epilepsy I know.
I have approached a few of the charities with things I have written in the past. My posts never make the glossy magazines. They don’t get retweeted or recommended. My experience of epilepsy isn’t the kind of epilepsy they want to talk about. It’s not the kind of epilepsy they want publicised. It’s the epilepsy to be condemned to the shadows and ashamed of; the epilepsy that destroys lives.
In their push to ensure that the public understand that epilepsy can be treated and ‘normal’ life can resume, they’ve excluded those of us for whom that simply isn’t true. In their drive to remove the stigma and fear associated with epilepsy, they’ve belittled the demons that keep me awake at night.
Don’t tell me not to fear epilepsy; I will show you a mother who has given mouth to mouth to her own son at the side of a busy road.
Don’t tell me that normal life can continue; I will show you a boy whose seizures stopped him being able to swallow and who has to be fed by a tube.
Don’t tell me that epilepsy shouldn’t prevent you from achieving your dreams; I will show you a child who has repeatedly lost skills and been unable to develop due to the devastating impact the seizures have had on his brain.
1 in 130 people in the UK have some form of epilepsy
Approximately 70% of children who develop epilepsy will respond to anti-epileptic drugs. The remaining 30% will develop difficult to control seizures or ‘medically intractable’ epilepsy.
There are approximately 1,000 deaths from epilepsy each year in the UK. That is 3 people every day.
More than 500 are attributed to Sudden Unexpected Death in Epilepsy (SUDEP). This is greater than the average annual number of cot death and AIDS cases COMBINED.
Whilst I am happy that awareness of epilepsy is being raised, I am worried that downplaying its severity merely encourages complacency and marginalises those of us who live within the shadows of ‘complex epilepsy’ every day of our lives. There are many different sides to epilepsy and some of them are devastating.
Don’t tell me not to be sacred. I am terrified!