Epilepsy has been witnessed as far back as 2000 BC. Sufferers were believed to be possessed by evil spirits or demons and were feared, even cast out of society. It wasn’t until the 17th century when it was thought to be a brain disorder. Two centuries later, it was thought that ‘electrical discharges’ were responsible for epileptic seizures.
Certainly, there is a stigma surrounding epilepsy and epileptics. This is mainly because of ignorance. When we see a depiction on TV or in the movies of someone undergoing an epileptic seizure, we immediately know it is wrong. In reality, it is off-putting to witness a seizure, for sure. Typically, people speculate as to the ‘trigger’ for the seizure. Is it flashing lights? A confusion of sights and sounds?
A stigma is when a person is labelled and identified by this label. Because of this they are set apart from the rest of us, stereotyped in a negative way. They are discriminated against. Teens with epilepsy, like any teen, are already struggling with their own identity. Now they have to deal with the stigma attached to them just because they have the disorder.
Misconceptions and prejudices toward epilepsy fuel the stigma.
As I had mentioned in my previous column, our son, Adam, has been diagnosed as epileptic since 2020. He has had moments where he is afraid and uncertain of his future. He fears being alone in the world, having to live alone. It is hard to hear him stressing already about his future at such a young age.
Another, riskier surgery for Adam was brought to our attention. This was the DBS. Deep Brain Surgery. Essentially, this involves implanting electrodes in certain areas of the brain to emit impulses that affect brain activity. A pacemaker-like device is implanted under the skin on the chest. It is connected by a wire to the electrodes affixed to the brain.
On August 1, 2023, Adam had his DBS surgery. Used was the Renishaw neuromate robot, which allowed for extreme accuracy in placing the electrodes on the brain. Since then, we have not seen any tonic-clonic or absence seizures. Even recently, there has been a reduction in some of his medications.
My wife and I allowed DNA research done from our blood, and from that, researchers determined that neither of us was genetically responsible for Adam’s epilepsy. However, they did discover Adam has a rare disease called TANC 2, a disorder first discovered in 2019. (Essentially, abnormal proteins cause brain cells to be unresponsive to stimuli: an obviously abbreviated explanation).
It is rare. As of 2019, only 20 cases in the world have been documented.
Characteristics of TANC2 can include autism, ADHD, intellectual disability, seizures, delayed speech and motor skills, epilepsy, chronic constipation, and others.
Adam’s experience/journey with the disorder is his own (researchers at the Children’s Hospital in London want to write a scientific paper on him). Children and adults, the world over, have their own experiences and journeys. Again, education and empathy, not labels, are the best support.
March is Epilepsy awareness month. March 26 is Purple Day for epilepsy. The second Monday of every February is International Epilepsy Day.