Say hi to Gabrielle; a consultant and mother who has recently begun sharing her epilepsy story with the community on Instagram (@liveforacure). She has lived with absence seizures for most of her life and received a diagnosis at 16-years-old following her best friend proactively logging her seizures! Read her story here.
These days, most of my time is spent looking after Audrey, my 3-month old baby and she is just adorable! Our little family (me, my husband and baby) live in Phoenix, Arizona.
We previously lived over in Alaska, and we’d take full advantage of our beautiful surroundings. We love to camp and hike, Phoenix isn’t quite the same as Alaska for outdoor activities and COVID has limited us a little but this doesn’t mean we can’t still enjoy the little things in life; hearing Audrey babble and learn new things every day is amazing
When I was much younger, around elementary school age, I was a pretty smart kid but seemed to be getting lower grades in tests. I seemed defiant, whenever my parents asked me to do anything my eyes would glaze over. At 16, I had a best friend who noticed me pausing during conversation and she started to document it. That’s when she told me maybe I should see a doctor. So, I went and had my first MRI & EEG; it was different and scary.
During the tests, they detected multiple seizures that were non-convulsive. Next thing I know, I’m getting handed a list of things I can’t do. Chewing gum, bathing alone, all sorts. I was getting over 100 seizures a day! They were super short and just felt a little weird.
From diagnosis to now
Following the diagnosis, my parents were super supportive and helped me stay well whilst also living my life. The medications were pretty nasty at times, luckily I found a great neurologist who changed my medication and at 23, I was able to drive.
I recently started speaking openly about my epilepsy and I have found the Instagram epilepsy community so incredibly supportive and welcoming. When I was younger, I was a lot quieter about my condition. It meant I had to work around a lot of the activities such as drinking alcohol in my twenties, I’d instead host get-togethers, I navigated it pretty well in the end.
Read our top tips for telling people about your seizures.
Until I could drive I would have to take assisted buses which were scheduled in advance, making me a pretty strong planner!
Find out more about driving with epilepsy here.
The Instagram community
Around a month ago, I started my platform inspired by Epilepsy Awareness Month. I was having my EEG, and thought “this might be helpful to share with others!” so they would know what the process looked like. Some people told me it might be ‘unsettling’, which drove me even more to raise awareness! 1 in 26 people have seizures but not many people know seizure first aid - so many things inspired me. It’s been great to help people with their questions.
Find Gabrielle on instagram here: @liveforacure
Tracking with Epsy
I love the Epsy App. I was working 60 hours a week, I’d forget whether I’d taken medications and now that I have my daughter, I have been very tired. However, Epsy has given me that reassurance I need every day. Not only this, but I also use the app to log my feelings so I can refer back.
When I share the app with my neurologist using the Doctor’s report (find out how to download yours here), it’s great for driving conversation and getting him informed on what’s going on. Everything’s so much easier.
Users can connect with their neurologist through Epsy Hub, the platform for healthcare professionals which can be synchronized with the Epsy app, for improved conversations during appointments.
Gabrielle’s message to the epilepsy community
Know you are not alone, I understand it can feel isolating, I didn’t tell people for a long time. There are communities out there who can support you. Reach out to the epilepsy community - lots of people want to cheer you on, both in real life and online!
It will be OK, find yourself a great and understanding neurologist, it makes all the difference.