Tiffany Kairos & Refractory Epilepsy
Meet Tiffany Kairos, an epilepsy advocate, blogger and the founder of The Epilepsy Network. Based in Ohio, she lives with refractory epilepsy.
Tell us about your epilepsy story?
I was diagnosed with refractory epilepsy at the age of 22 and I experience both tonic clonic and complex partial seizures. Just four months after marrying my husband, Chris. I went through Extensive testing such as EEG, VEEG and a SEEG to determine what type of seizures I was experiencing and what type of epilepsy that I have. The diagnosis was abrupt and turned our world upside down. I experienced a flurry of emotions ranging from disbelief, sadness, frustration, and even depression. With the support of my spouse, family and newfound friends within online social media groups, I became inspired to tell my story and raise awareness of epilepsy.
Read more: Epilepsy and depression
Are there any standout experiences in your journey?
For me it’s great to just meet others who’ve been affected by epilepsy in person. Some other moments that stand out are winning the WEGO Health Awards in 2015 for my advocacy work, and also going into colleges to talk to students about my life with epilepsy and what the condition is actually like.
Experience with neurologists
My first 3 neurologists were unsympathetic, rushed and didn’t value my input. I currently have a neurologist who exceeds my expectations as the right doctor for the job.
Find out more: Everything you need to know about epileptologists
The Epilepsy Network and advocacy
I began building a community on social media in 2011. Together, my husband and I created The Epilepsy Network (TEN) which can be found on Facebook, Twitter and Instagram, which has supporters from around the world.
The Epilepsy Network is a global community of people affected by epilepsy, uniting to share experiences, learn information about epilepsy, increase awareness, ask questions, break stigmas, and much more!
Experience with the Epsy App
My experience with the Epsy App is that It’s easy to navigate, has a lot of helpful features for not only myself but my doctor as well. I’m able to log my medications and seizure activity. A great tool to have for epilepsy management.
Advice to others:
Don’t let epilepsy hold you back from living life to the fullest. Yes, seizures are unpredictable and epilepsy is not fun, but take the best care of your health that you can. Do all that you must do to try to stay seizure-free and remember to responsibly live life to the fullest.
Take it one step at a time. Start each day with the mission to be the best you can be and do the best that you can do. Do what you need to do. Listen to your doctors. Remember to focus on all things that lift you up and make you happy and not focus on any doubts or fears you may have.
How can you share your epilepsy story?
If you would like to share your epilepsy story with the Epsy community, you can contact our team at firstname.lastname@example.org and our team will set this up for you.