Photo provided by Dr. Prince Kazadi, CEO of ASLEK
Epilepsy is a neurological disorder resulting in an individual having seizures. There are many reasons that epilepsy develops, yet many causes are never diagnosed. Currently around 65 million people in this world are battling epilepsy. Despite those numbers, it is one of the most underfunded condition when it comes to care and research and carries a high stigma.
Dealing with the stigma that is associated with epilepsy is very difficult. I have been battling epilepsy for forty years now. Employment discrimination, loss of job opportunities, mistreatment by medical professionals, challenges of proving I could obtain a higher education are just a few examples of what I have faced in life. My seizures have been controlled with medication now for 16 years and I feel it is my obligation to give back to the epilepsy community in every way that I can.
In 2019, I had the honor of winning a leadership grant at the University of Redlands where I obtained by MBA. The leadership grant helped to pay for me to take part in their study abroad program and take a class in South Africa. I spent ten days in South Africa with my classmates and professors. It was a life experience seeing not just the beautiful parts of the cape, but the reality of hardship many people face. We visited a couple of townships and saw the level of inequality when it came to educational and economic opportunity. When visiting the Parliament, I found out that the South African healthcare system only provides generic medication for people who are on assistance. To get the best care, you must purchase a private health policy. The result is that many with pre-existing conditions who rely on assistance are not getting the level of care they need.
When I returned to the United States, I still was thinking about what I had learned and seen with my own eyes. Connecting to others throughout Africa, I saw how difficult it was for someone with epilepsy to survive. I saw how much more challenging it is compared to the United States. I decided then that along with providing educational and advocacy services here in the United States, I was going to provide the same in Africa at a humanitarian level.
I created the Defeating Epilepsy in Africa program to start working towards achieving what is truly needed for individuals with epilepsy. Education to help doctors and nurses provide better care, access to medication, proper nutrition, and access to the resources necessary to help in cases of emergency. My team has been working hard to help put all this together. We have created a four-phase project plan and we are honored to be starting in the Democratic Republic of Congo with Dr. Prince Kazadi and ASLEK.
Please follow our website, like our social media pages, and subscribe to our YouTube channel so you can follow and see the progress we are making towards defeating epilepsy in Africa. For us to end the stigma associated with epilepsy, we must help all that are battling epilepsy, no matter where they are in this world. Thank you for your support and together we will defeat epilepsy.
-Natalie L. Boehm, MBA, RBLP-T
President and Founder, The Defeating Epilepsy Foundation