Tell us about your epilepsy story
In the 3rd grade people would notice me having staring spells, but I would have no idea. A teacher told my mom, she took me to a neurologist who said I had absence seizures. I was growing into it rather than out of it. I had an EEG and CT scans, and then tried multiple medications that didn't work.
At 14 I started taking Lamictal, which I have now been on for 13 years. I have only experienced one tonic clonic seizure. Now my seizures are controlled, as long as I take my medications properly. I avoid flashing lights as they are my main seizure trigger, and also need to make sure I’m getting enough sleep. I know myself and my body, so sometimes I just need to slow it down. I have managed but I am unable to drive, and get around mostly with help from my family, friends and also Ubers.
Finding a community after diagnosis
I hadn't found anyone else with epilepsy until I got to college to study broadcasting. I didn't tell people about it because they have a certain image of what epilepsy is, and that isn’t what I experience. I would have spells in school, but people wouldn't understand what was going on.
There's not much knowledge out there, people think epilepsy is just one type. In college I met other people with absence seizures. I learned a lot through Reddit about epilepsy, and that's how I found Epsy. Now I’ve found more Facebook and Instagram pages - I especially like the memes!
Read more: Find epilepsy support groups
Within the African American community there’s a history of a lack of trust with doctors, and there are misconceptions about epilepsy. People treat you like you're stupid. The ignorance and lack of knowledge is annoying. I'm a fully functioning adult with a college degree!
Experience with the Epsy App
I love the daily reminders, they aren't all corporate - they are friendly and use emojis. The app is very reliable and doesn't crash. It is so detailed, many other apps are super vague. Before I was using an archaic pillbox and with my memory loss I’d forget if I’ve taken my meds.
The journey with doctors
The teacher who told my mom about my staring spells, has a niece with epilepsy. There were so many terms I didn't understand, it wasn’t like going to a normal doctor. They were looking in my eyes and doing lots of weird tests. I have seen a couple of doctors. I was at New York Presbyterian, and now I go to the Emory Department of Neurology here in Atlanta. Recently I did an inpatient hospital stay for testing. It's quite an interesting experience!
What would you say to the younger you?
Keep your head up. It's extremely tough. The hardest thing for me is not driving. But epilepsy can be a mental and emotional challenge. You are not the only one - there are people out there like you. Embrace it and take it for what it is.
