On July 25, I’ll be participating in an activity to fight epilepsy stigma and raise money for the epilepsy community. You’re probably familiar with the format: it’s a run/walk! Currently, I participate in the Fun Run/Walk put on by the Epilepsy Foundation of Western/Central Pennsylvania (EFWCP). The main point of the walk is to raise money for epilepsy services and research, but I do it also to help combat stigma.
How does it help the Epilepsy community?
Good question! The money my team and I are raising provides services for individuals affected by epilepsy in the area the EFWCP serves. It also contributes to research this disorder and work towards finding some answers we so desperately need. I have personally benefited from the EFWCP in many ways. Growing up I attended Camp FROG, a camp just for individuals with epilepsy! It was so much fun to make friends with kids who actually understood what I was going through. I also had the wonderful experience of attending Kids Speak Up, an advocacy program which sends kids from all over the U.S. to Washington D.C. to speak with their state representatives about the need of the epilepsy community and the importance of funding. The EFWCP has held conferences, fun events, and retreats, allowing me to become comfortable with my epilepsy. Meeting others with this diagnosis continues to remind me that I’m not alone. There are so many people around me who live with similar difficulties; we fight not only for ourselves, but for each other.
How does walking fight epilepsy stigma?
In the months leading up to the walk, I rely heavily on social media to spread the word and raise money. While doing so, I tell my story. I remind my friends, family, and acquaintances of my diagnosis, what I’ve faced in my 17 years since my first seizure, and how the challenges affect my life. Doing so puts a face to the disorder. It no longer becomes an invisible illness that people can claim to know little about; it is one that continues to impact someone they know. I try to encourage awareness and knowledge about epilepsy, therefore erasing fear and confusion. The more people hear about it, the less “invisible” it becomes. Stigma has less claim over epilepsy when the truth is revealed!
The walk itself is, to me, a symbol of triumph. It says that I have not been and will not be overcome by my epilepsy, that I can continue to do exactly what I set my mind to. Again, participating reminds me that I am not alone in my battle with epilepsy. When I spend time with others whose lives are impacted by this diagnosis; remembering I’m not the only person with epilepsy helps me cope with the difficulties I face. Being in this environment helps me fight my own stigma.
What can you do?
Do you have a local chapter of the Epilepsy Foundation nearby? If you’re not sure, click on this link and search for one near you. Don’t live in the United States? There are organizations advocating for individuals with epilepsy in countries all over the world. Speak with your doctor about reputable ones in your country or search the internet. Maybe you’ll find a chapter or organization which holds fundraisers like this one near you! And, if you’re near me, please come join us on July 25th to walk (or run) for epilepsy awareness. Bring some friends and have some fun! I will be there with my team doing the same!
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.