Meet Tiffany; a proud epilepsy advocate and the creator of The Epilepsy Spectrum Podcast. She has experienced seizures for over 30 years and has a passion for raising epilepsy awareness. Tiffany uses Epsy to remind herself to take her daily medications. Read her story here.
A little about me
Hi, I’m Tiffany! I’m 37 years old, based in Kentucky. I’m a country girl at heart trying to make a big difference in the epilepsy world for the last 10 years. I’m an author, presenter and many other things!
I’m so passionate about spreading the word with epilepsy – I run a podcast and I’ve produced a documentary film, Voice of the Epilepsies. The film is about a young girl living with epilepsy and her loving family. Her mother becomes her researcher, to try and find a cure for her daughter, Savannah. The epilepsy community made this film possible. It’s so encouraging to be part of a community that always comes together to raise awareness and support each other..
My epilepsy story
My epilepsy journey began when I was 7 years old. I experience what I call a ‘more hidden’ form of epilepsy, lots of people will say to me “you don’t look like you have epilepsy?”. Mine is more like a quiet shadow of the condition.
This is all because my seizures are absence seizures, I just blank out and then I’ll be back. It can be mid-conversation; I’d have weird spells to my family. When I was younger, they lasted a lot longer than they do now. Back in the 80’s, there wasn’t much education around it so it went unnoticed for years then when I was 12 years old I had a tonic-clonic seizure. This is when my diagnosis was made.
Another tonic-clonic seizure occurred in high school. I fell out of the car and busted my chin open! I still have the scar, and to me it’s a little reminder of the things I have dealt with and what I have overcome.
My podcast
The podcast was born from my passion to raise awareness. My podcasts discuss relevant topics that people want to know about, taboo or not! Whilst making the podcast I’ve learnt to keep an open mind and not take things personally.
My favourite podcast was with Terrence Michael, who works in the film industry. His mindset and view on life inspired me. He believes that certain cues in the film industry apply to your life and you should ‘live your life, no matter the outcome’. Even with epilepsy you have limits, you must focus on what’s safe and what allows you to live your best life as your best self.
My experience using Epsy.
There is so much to use in Epsy, from my experience everything that you need to communicate to your doctor is available in the App to log. My main use is the medication reminders. Memory loss can be a huge issue in the epilepsy community and Epsy really helps me here.
For those thinking of downloading – I can assure you it will help you remember your medication! The structure of the App and how it builds reports is crucial. In the past, I had found it difficult to communicate about my condition to my doctor. Epsy can give you a structure of all the information you need to share with your doctor.
Epsy 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.
My advice for those struggling with epilepsy during COVID-19.
Take the time to do whatever your body needs. I realize sometimes with epilepsy, social activity can be a struggle; if you’re at home alone, try your best to communicate with people in ways that are safe for you. We all feel disconnected now, lots of things are affecting our mental health. If you can try meditation and exercise to help with your mental health during this difficult time.
Read our tips on how to prepare for doctor’s appointments during COVID-19, here.
My message to those with epilepsy.
Take each day as a fresh day and apply this to your whole life. Learn to find what works for you and hopefully it will lead to improving your treatment. Be aware and mindful, pay attention to yourself and your health!
Epilepsy is always going to knock you down and be challenging. However, a challenge is an opportunity to grow. You take these lessons and add it to your personal character. It creates more strength psychologically than many would ever know. If we can handle epilepsy, we can handle anything.
