The Korea Bureau for Epilepsy and the students at “We are Epilizer'' have made efforts to improve the social perception of epilepsy. 

Epilepsy is a chronic, noncommunicable neurological disease that is caused by the misfiring of overactive electrical signals in the brain.

Epilepsy mainly causes seizures, which may include jerking of limbs, losing consciousness, or rapidly repeating a specific movement. 

Many people mistake epilepsy as a psychological disorder or a contagious disease, but both are not true.

Further, going against common instincts, suppressing movement of those experiencing epileptic seizures puts patients in danger. 

There are numerous misconceptions or false information about epilepsy, and these worsen the discrimination and social stigma against people with epilepsy. 

Approximately 50 million people worldwide suffer from epilepsy, including about 360 thousand patients from South Korea. 

In an attempt to prevent the prevent further discrimination against all such people with epilepsy, the Koreau Bureau for Epilepsy has gathered middle and high school students to write biweekly blog posts or social media articles.

During the first meeting, reporter Kim Junil (김준일), the CEO of Newstof, gave a lesson to the students on how to write captivating, meaningful, and engaging news articles. 

Using this knowledge, students were given 4 topics about epilepsy to write about over the 8 weeks of the program: what is epilepsy; what do other people near you know about epilepsy; what is the procedure for epileptic seizure first aid; and how can we prevent discrimination and improve awarenss toward people with epilepsy?

In addition to running the student blog writing group, the organization also operates many campaigns to increase awareness for epilepsy. 

To illustrate, it has given prizes to people who participated in the Purple Day event. 

Purple Day is an international day to increase the public’s attention to epilepsy, and the events include wearing purpose clothes, writing encouraging notes, and holding contests for creating art related to Purple Day. 

Recently, the Korea Bureau for Epilepsy has been running a campaign to enact the “Act on Epilepsy Management and Support for Epilepsy Patients.” 

The act provides a legal basis for efficiently implementing policies for researching epilepsy, providing support to patients, and making preventive treatment available. 

This new system will be able to manage issues surrounding epilepsy and lay the foundation for the protection of human rights that many people with epilepsy are denied.

Patients will have opportunities of rehabilitation and independence as well. 

Ultimately, the goal is for epilepsy patients tobe set free from prejudice and discrimination to a peaceful world with equal opportunities to life, liberty, and pursuit of happiness.

Currently, the Health and Welfare Committee of Korea is reviewing the act, but the act needs more support from the public. 

Here is the link to participate in the campaign. 

All one has to do is to sign one’s name.

An interview with Mr. Kim (김덕수), the Secretary General for the Korea Bureau for Epilepsy, gave a deeper insight into the efforts of the organization to reduce discrimination or prejudice against people with epilepsy.

Mr. Kim replied to the question of how the Korea Bureau for Epilepsy started by stating that the initial launch of the organization began in 1965. 

It started when Lenna Belle Robinson, a Medical Missionary from the United Methodist Church in the United States, came to Korea. 

At that time, patients didn’t have access to the treatment and medicine for epilepsy.

Therefore, Robinson came and worked with Korean pastors and medication professionals to research more on epilepsy and help more people receive medical care. 

She later started the Rose Club Korea, which led to Korea’s most influential organization dedicated to epilepsy. 

Next, to the question of what actions the organization has taken to improve social perception of the neurological disorder, Mr. Kim briefly mentioned six activities. 

First, the organization manages a group of college ambassadors who make social media posts to increase the awareness of epilepsy. 

It also runs campaigns to enact policies, provides education to public schools and parents of children with epilepsy, holds contests related to epilepsy, and increases awareness of epilepsy through the Ceremonial First Pitch in baseball games. 

Finally, it also designs posters to convey important information about the neurological disease. 

Among these activities, Mr. Kim highlighted the reasons as to why the organization gathered middle and high school students to write blog articles, instead of college students. 

He explained that middle and high school students spend the majority of their time at school and, therefore, with their friends.

Thus, there are many opportunities to talk to friends about epilepsy and spread awareness, changing the perception towards epilepsy from a young age. 

Mr. Kim also commented that this memorable activity helps young students to research and write news articles. 

During the interview, Mr. Kim claimed, “There are 30 students in this program.” 

If we finish this program off with 30 aspiring, young students with more knowledge of epilepsy and a changed perception on epilepsy, that is enough – I would be happy.”

Finally, to the question of the different ways individuals can make efforts to fight against the dscrimination related to epilepsy, Mr. Kim emphasized that bigger change starts from each and one of us. 

We have to have correct knowledge about the disease and educate others. 

We need to have a prejudice-free, open mindset; if we see a person with epilepsy experiencing discrimination, we have to take action and stand up against injustice. 

We have to take the initiative to look into possible campaigns to participate in, or ways to donate and make actual change.

As a final note, Dr. Kim asks the readers of this article to sign up for the act by going to this link.

Rachel Kang
Grade 11
Yongsan International School of Seoul