Having seizures daily for nearly twenty years I learned that positive thinking helps. TEN has helped me a lot keep my head held high, and have hopes when I’m having a bad day due to epilepsy having me down or depressed. Tiffany Kairos (TEN administrator) is of the top advocates out there in my opinion, and I recommend her friendship to anyone who is not already her friend or follows her work.
I have only been diagnosed with epilepsy for two years, at the age of 37. My life has been turned upside down in ways I would have never imagined. Had it not been for TEN and Tiffany Kairos, who has personally taken the time out of her days to help me through some of my darkest hours, I wouldn’t be the woman I am today. I am a stronger person because of TEN and Tiffany Kairos. The love and support that they have given me is overwhelming. I would highly encourage anyone who has epilepsy to join The Epilepsy Network (TEN) as they are simply amazing, not only in their advocacy for epilepsy, but for the much needed support that epileptics need.
I’ve been diagnosed with Epilepsy since the age of 8. It wasn’t until my mid 20’s when the seizures returned and I knew I had to become an advocate and spread awareness! Recently it has become so much easier to express myself and connect with complete strangers who suffer from Epilepsy. Thanks to The Epilepsy Network, so much info is posted that I already know but is always available to share with my friends and family. The Epilepsy Network (TEN) has helped make my coworkers and friends not be afraid of Epilepsy and easier for everyone to work with. My epilepsy awareness will only continue to grow!
I had my first seizure at age 17, a partial complex seizure. My seizures only occurred during my period, known as catamenial seizures, although I didn’t recognize that at the time. When an EEG was completed it was normal, since it wasn’t during my period. And since my parents were getting divorced the doctors at the time concluded that I was having anxiety attacks. I went on to have “anxiety attacks” for over 10 years.. through my first job, starting college, going to nursing school. One day while riding with my classmates to a clinical site I had my first tonic clonic seizure. I was then started on anticonvulsants and finally everyone realized my “anxiety attacks” were actually seizures since they also stopped. It was the best day of my life. I am lucky that I am controlled on medication and I am also lucky that I completed school and eventually became a nurse practitioner. Because seizures can present in so many complexing ways it is hard for many providers to recognize and it is easy to misdiagnose. I feel God has a purpose for my seizure disorder and it is to help others who are going through the same periods of uncertainty, fear, hopelessness and are in need of understanding and to diagnose and treat those in need. The Epilepsy Network took me by surprise. I figured I would just read about other people’s seizures. Instead I cried. I never realized how isolated I felt and now I feel like part of a community. It’s a nice feeling.
In February 2013 I came across Tiffany Kairos and The Epilepsy Network (TEN) on twitter. At the time I was starting to write my own personal blog titled Sazzle’s blog about overcoming anxiety and coping with Epilepsy. Throughout my Epilepsy journey various questions would arise about my condition therefore I needed to find acceptance in myself. TEN helped me do this. They contributed towards my own recovery with my condition. To find The Epilepsy Network was an absolute blessing and over the past year I have been given the opportunity to speak with Tiffany on a regular basis and now have the confidence to want to express my Epilepsy in a more positive manner. To know that we won’t be defeated in our journey with Epilepsy is something I’ve learned speaking to Tiffany and TEN. TEN to me is exactly what it says on the tin. It’s The Epilepsy Network and it helps so many. TEN is without doubt one of the most resourceful websites that can assist others with Epilepsy; for me it has been a website that has offered me unconditional support and has made me see that I’m not alone when conquering Epilepsy. To know that other people across the world share similar concerns about Epilepsy was one that made me open my eyes and gave me the knowledge to want to learn about my condition more. After being diagnosed over 21 years ago I have now found a website that can provide the useful information that I require in order to accept my condition. What I noticed about TEN from the offset was the passion that the people involved in this website share with their followers. To be a part of that is a pleasure and to know I now have a T-Shirt with the TEN logo on it makes me proud to be associated with this website and to continue spreading awareness by wearing their label. Since purchasing my T-shirt from Tiffany I’ve had the pleasure of explaining to others in my community explaining who TEN are and where they can be found if they need any advice on Epilepsy. What has made me smile the most about The Epilepsy Network was the fact that for the duration of me having Epilepsy there were only certain websites that could provide you with the honesty that we so need when it comes to our condition. Stigma was and still to this day can be rife when the word Epilepsy is mentioned however TEN made me feel welcome to express my views openly and gave me the assurance that I wasn’t alone. Merge that with the fact that TEN provides a colourful, fun yet serious message when representing Epilepsy awareness. To fight for the people affiliated with Epilepsy is something TEN does beautifully. In the meantime we can all share our stories through TEN without holding our head in shame and continue to receive the support TEN has to offer. For those who are reading this. Rest assured that TEN has provided me with the support I need and know they will do the same for you. The fact that you can be able to be true to yourself and be able to receive advice is a marvelous thing. TEN are without doubt the real deal!
Epilepsy is a strange condition since it doesn’t show up except very suddenly. You may meet the same person many times but never know that they’ve dealt with seizures. It was very easy to hide from my peers through various stages of my life. But those of us with epilepsy shouldn’t ever have to hide it. The Epilepsy Network is one of those communities committed to changing this. Awareness is critical because epilepsy is not, in fact, contagious.