This post was written by Angus A. Wilfong, MD, associate director of Barrow Neurological Institute at Phoenix Children’s Hospital and division chief of Pediatric Neurology. Phoenix Children’s Hospital, is a Leadership Sponsor of the November 2017 Epilepsy Blog Relay.
On Stigma and Epilepsy
Epilepsy is no one’s “fault.”
It’s time to shed the stigma of a disease that affects one in 26 people.
Epilepsy is unbelievably common, yet few people know anything about it. And it’s strange, because just about everyone you meet can tell you something about Lou Gehrig’s Disease (or amyotrophic lateral sclerosis), a condition that is extremely rare, but enjoys a high level of awareness.
The same is true of muscular dystrophy – thanks to Jerry Lewis’ advocacy. Michael J. Fox is publicly fighting Parkinson’s Disease, bringing a high level of understanding to a very rare condition.
Epilepsy simply hasn’t generated the same awareness even though it’s one of the most common neurologic conditions. Roughly 3 million people are living with epilepsy in the United States today, and 150,000 new epilepsy diagnoses are made each year. But people just don’t talk about it.
It doesn’t help that people who suffered from seizures were long-believed to be possessed by evil spirits that needed to be exorcised. That seems laughable today, yet I wonder how much the perception persists.
From a funding perspective, other neurologic conditions – even those that affect just a tiny fraction of people – receive a much bigger share of the pie. This is incomprehensible to me, but points to the same problem: the epilepsy stigma is pervasive.
When it comes to treatment, the issue is even more pressing. In my experience, people with epilepsy (and those raising children with the condition) often don’t get the education or support they need. This is especially true for people with intractable epilepsy who don’t respond to medication and experience frequent seizures. Others require so many meds that their brain function is impaired. And it absolutely breaks my heart – because it doesn’t have to be this way. Breakthroughs in treatment are transforming the lives of patients young and old – even those with intractable epilepsy. In fact, it’s the only neurologic condition that can be cured. Imagine – life without epilepsy
But to identify the solution, you must first be willing to talk about the problem. And that’s what I do, day in and day out. My work is in treating epilepsy patients, but my mission is to strip away the stigma of the disease – to help children live a full and normal life, free of the symptoms and the perceived stigma and shame of epilepsy.
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