Each year, The Anita Kaufmann Foundation and the Epilepsy Association host the Purple Day® Around the World Epilepsy Education Conference with the hope of de-stigmatizing epilepsy by educating the public. The last three years, the conference has been held at Disney World®. This year, due to the worldwide pandemic, this FREE conference is being held virtually, giving the opportunity for more to attend without safety and travel concerns.
The virtual conference will take place March 24th thru March 26th. The first two days will consist of educational and advocacy sessions with well-known doctors, experts and epilepsy organizations.
Nearly 1000 people have registered for Purple Day® Every Day’s annual epilepsy education conference. Registration is open and the conference has more epilepsy education sessions planned than ever before. Check out our growing list of speaker sessions, all focused on specific key areas of epilepsy education.
My name is Gideon Ronald Akanyijuka. I am CEO of Epilepsy Awareness Uganda (EAU). EAU is a Non Governmental Organization (NGO) that brings together all persons aﬀected by epilepsy in Uganda.
This past year has been so difficult for everyone, but for people living with Epilepsy, it has been even more difficult. Considering there was a total lock down for three months in Uganda, getting medication was even more difficult than usual. And this made the conditions of most people living with Epilepsy that much worse.
Having less food or no meals at all proved to be a problem for those people with epilepsy who take medication. We received so many calls from our epilepsy awareness Uganda family who needed help but we could only reach out to few, due to fewer funds available.
Gratitude for the Good Times
Though the year has been difficult we have had some good times. EAU has received donations of wheelchair to benefit one of our community members who really needed a wheelchair for easy movement. We also received masks and sanitizers for our epilepsy family.
Life is about being honest, real, humble, understanding, and being able to reach out and touch the lives of others while holding gratitude in your heart. Thank you to all who have supported EAU in our time of need.
Going live and speaking about how I overcome the fear of uncertainty of having seizure and accepted my chronic illness was a different kind of exposure for me. Two weeks later I was invited on another interactive webinar where people asked me precautions I take while cycling or running.
Safety on the road
Participants also asked how I manage myself if I get seizure during exercise activities. I let listeners know that I always wear an ID band which has my SOS contacts and wear a smartwatch which gives a location to my caregivers. And most important, whenever I feel an aura of having seizure I prefer to stop just to be safe.
On Becoming an Advocate
I then joined the Samman NGO group which is the Mumbai chapter of Indian Epilepsy Association and started attending their webinar as a member. One day they set up a meeting to discuss the 50 Million Steps campaign of International Bureau of Epilepsy. I suggested the group could do a Virtual Walkathon on a day before of the International Epilepsy Day. The group was enthusiastic and they managed the virtual event very well and raised almost 28million steps in 5weeks.
Due to pandemic most of the races I enjoyed participating in were cancelled or went virtual. I did do some half marathons virtually to keep myself motivated. And I got the idea of Virtual Walkathon from these virtual events only.
Social Connections and Epilepsy
Though people with epilepsy may be totally different from each other in nature, behaviour, experience and when start becoming part ofa community you learn new things, unlearn old things and relearn them in a better manner. This is what I discovered by sharing my story and the social connections within the epilepsy community.
For 35 years I have had epilepsy and have found that although I have my seizures under control with medication, occasionally they will happen even with taking medication. Over the years I have been on more than 15 different medications. A more likely number would be 20, however I can’t exactly recall to be honest.
One of the side affects of having seizures and some medications are memory loss. Some days are good and things go smooth, and some days are not so good and are a bit turbulent more or less. It’s important to understand this in the moments of frustration when you can remember a sentence and or event that was just on your mind. Has memory loss ever been part of your frustration?
To keep the turbulence to a minimum accepting that our brain and the neural networks may be a little over worked, and taking it slow for the time being is probably a good idea. These moments happen to me from time to time and are certainly uncomfortable and frustrating, especially around others in day to day life or work. I encourage you to try to remain calm in these moments and let them pass, they are only temporary but at certain times can happen.
Patience and Epilepsy
Patience has been my best ally, and by recognizing these moments for what they are helps to reduce any stress and anxiety that is potentially causes. Those with epilepsy and partners of epileptics should be aware of this so to help remember or remind us that it’s much easier to be aware and except this. Some days will be good, some in between and some will be better spent being patient and compassionate with ourselves.
Although it has been difficult at times living with some of these side effects It takes strength to adapt to the constant changes and ups and downs that come from epilepsy. I used to view my condition in a negative light, however there is an opportunity to embrace the positive. I hope this helps you or someone you love that has epilepsy.