I'd argue that one of the biggest threats facing people living with epilepsy are the myths lying within what the public already (thinks) they know. I tried to tackle several in the 'Under the Lights' short film.
5 Myths About Epilepsy You Might Still Believe
Epilepsy is one of the most misunderstood conditions out there. Misinformation leads to fear, stigma, and even dangerous situations. Let’s debunk five of the biggest myths:
#1: Epilepsy is Rare
Topping the charts - Epilepsy is not rare. It affects 1 in 26 people in their lifetime (stats vary a little country to country). When one considers that nearly every one of those patients has a family or friends that might be touched by the condition, we realize how present epilepsy really is in our world. It also makes clear just how silent we are.
✅ Fact: It's estimated over 65 million people worldwide have epilepsy. That statistic just barely falls short of being a larger population than Alzheimer's, Multiple Sclerosis, and Cerebral Palsy COMBINED!
#2: You Should Hold Someone Down During a Convulsive Seizure
A big-y. We still see this one pop up all the time in media and it's no wonder we continue to pay the price. A person can be seriously and permanently injured by being held down. Many of my friends have permanent shoulder injuries from EMTs or Paramedics failing to know this is a myth.
✅ Fact: Never restrain someone having a seizure. Instead, turn them on their side and protect their head.
#3: You Can Swallow Your Tongue During a Convulsive Seizure
Another highly dangerous myth. I would love to know how and where this myth began. It is vital that a person having a seizure have unimpeded ability to breathe. Putting anything in their mouth (famously a spoon) causes great risk to the patient's health and the object holder. The force of a bite in a tonic clonic seizure can be enough to seriously harm ones fingers. Biting your tongue hurts a lot, but tongues also heal pretty quick compared to fingers.
✅ Fact: It’s physically impossible. Never put anything in a person’s mouth during a seizure.
For more information on seizure first aid visit epilepsy.com
#4: An Epilepsy Diagnosis? Forget Your Hopes and Dreams
An epilepsy diagnosis can be a huge setback. It could mean a revoked driver's license, a challenging medical journey, and a reassessment of future plans. It's fascinating to see that 'celebrities with epilepsy' is a common google search. People aren't searching that because they are wondering if they'll grow up to be Prince or Elton John (famously people with epilepsy), they want to know if it's OVER.
A diagnosis won't necessarily prevent you from living a meaningful life. It may mean you have to find a different route forward. It's vital for people with epilepsy to be surrounded by stories of people who are living well in spite of their challenges.
That said, every diagnosis is different, and there is no one standard for what those challenges look like.
✅ Fact: People with epilepsy can achieve incredible things—from artists to athletes to scientists. It’s about support, asking the right questions, and finding things to look forward to where ever possible.
#5: Flashing Lights Trigger All Seizures
This one is worth an article by itself. Photosensitive epilepsy is actually exceedingly rare. There are over 30 kinds of seizures and any number of triggers, varying greatly from patient to patient.
Here's a thought -
Patients often will decry that it can be annoying to be asked if they are at risk of being hurt by flashing lights, citing the rarity as a reason to 'end the stereotype'. I actually think this is a dangerous idea. With so little empathy out there, and so little understanding amongst the general public, I applaud those who think to ask about flashing lights. It may be rare, but I think it's a really bad idea to encourage the public to stop asking 'because it can be annoying'. For a photosensitive patient, a person asking how to accommodate could make a difference for their safety. If it means that people are more thoughtful around their peers with epilepsy, it's definitely not worse than the myths above.
✅ Fact: Only about 3% of people with epilepsy have photosensitive epilepsy. Triggers vary widely.
In Under the Lights films, I tried to address many of these in an effort to create an empathetic point of reference that reaches people via entertainment rather than strict education.
Go watch it HERE!
The best way to fight stigma is with knowledge. Let’s start the conversation: What’s a myth about epilepsy you’ve encountered?
EXCITING NEWS!
We made the FULL Under the Lights film, with huge stars and big power, we will deliver the most impactful moment for epilepsy awareness in HISTORY.
To be the first to find out when the full movie is released - put your email in HERE at www.underthelightsfilm.com
SUBSCRIBE FOR MORE!
