Stopping the Stigma, One Race at a Time

Rachel Redmond is 20 years old, a member of UNC-Chapel Hill’s club swim team, and has epilepsy. Despite the complications and setbacks, Rachel defies the disorder and breaks the stereotypes about what is possible for someone with epilepsy.

What is Epilepsy?

“Epilepsy is something that happens in your brain…your synapses misfire, which results in anything from a twitch to full-on shaking.”

 

 

According to the Epilepsy Foundation, epilepsy is “a condition of the brain causing seizures,” and a seizure occurs when neuron communication in your brain is disrupted. Someone has epilepsy if “they have two or more unprovoked seizures separated by at least 24 hours or after one seizure with a high risk for more.”

Quick Facts About Epilepsy, provided by The Epilepsy Foundation:

  • 65 MILLION: Number of people around the world who have epilepsy.
  • 3.4 MILLION: Number of people in the United States who have epilepsy.
  • 1 IN 26 people in the United States will develop epilepsy at some point in their lifetime.
  • BETWEEN 4 AND 10 OUT OF 1,000: Number of people on earth who live with active seizures at any one time.
  • 150,000: Number of new cases of epilepsy in the United States each year
  • ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
  • 6 OUT OF 10: Number of people with epilepsy where the cause is unknown.

“For someone who has never had a seizure, I can describe it as leading up to something, leading up to something…and then the seizure is just a tangible nothing.” 

Throughout history, people with epilepsy (PWE) have been pushed to the fringes of society due to unnecessary and unreasonable stigmas. In the 20th century, PWE were barred from marrying until the 1970’s, and many states supported the sterilization of people with epilepsy in the early to mid 20th century. Even today, there are parts of the world where epilepsy is considered a valid reason to null marriages.

One pervasive belief is that those with epilepsy shouldn’t participate in sports. However, studies show that when PWE participate in sports, it benefits not only their mental and physical health but also society as a whole.

“To all the other kids with epilepsy, especially those in sports or in anything that requires time and effort…epilepsy doesn’t define you.”

Despite the misconceptions that affect Rachel and other athletes who live with epilepsy every day, the disorder doesn’t have to hold them back. For example, there are a number of famous athletes who thrived in the spotlight while also living with a seizure disorder.

In some cases, what holds those athletes back isn’t the disorder itself, but the social stigma that they must deal with once they openly discuss their epilepsy.

As a society that strives to be inclusive and forward-thinking, it is imperative that we do away with harmful, unnecessary stigmas before any real change can occur.

Rachel’s story isn’t singular. Thousands of students and adults are defying the boundaries that society tells them people with epilepsy must remain in.

Only together can we stop the stigma.

 

 

 

 

Sources: 

Capovilla, G. , Kaufman, K. R., Perucca, E. , Moshé, S. L. and Arida, R. M. (2016), Epilepsy, seizures, physical exercise, and sports: A report from the ILAE Task Force on Sports and Epilepsy. Epilepsia, 57: 6-12. doi:10.1111/epi.13261

Andres M Kanner, Depression in epilepsy: prevalence, clinical semiology, pathogenic mechanisms, and treatment, Biological Psychiatry,Volume 54, Issue 3,2003,Pages 388-398, ISSN 0006-3223, https://doi.org/10.1016/S0006-3223(03)00469-4.

Kenneth R. Kaufman, Nathaniel D. Kaufman. Stand Up For Epilepsy San Diego photo-shoot: a personal odyssey. Epileptic Disorders. 2013;15(2):211-215. doi:10.1684/epd.2013.0585

José Pimentel, Raquel Tojal, Joana Morgado, Epilepsy and physical exercise, Seizure, Volume 25, 2015, Pages 87-94, ISSN 1059-1311, https://doi.org/10.1016/j.seizure.2014.09.015.

Hitchcock, Joe. “The History of Epilepsy: an Interactive Timeline.” OUPblog, 17 Apr. 2017, blog.oup.com/2015/03/purple-day-history-epilepsy-timeline/.

University of Bern. “Sport, physical activity help against depression.” ScienceDaily. ScienceDaily, 16 September 2014.

The Epilepsy Foundation