In life, there are few people that are true world changers. I believe that the medical community has the opportunity to be full of world changers if they stop, pause, and remember the reason they chose the medical field as their career. A few chose this field because they wanted to make money however, I believe that most chose this path because they have a passion to help others. Sometimes the enormous amount of pressure for doctors to see more patients bogs down their passion… Yet, I believe if we ignite that passion again we can see more WORLD CHANGERS come out of the shadows and show what their hearts truly feel. If doctors could unite together against insurance companies, pharmaceutical companies, and hospitals to stand with ONE voice saying we are here for the patients then we would make our healthcare better. It’s not about costs…it’s not about name recognition….it’s about a person… a person that lives and breathes….it’s about a young girl begging for her seizures to stop…it’s about a young girl going off to college while living with epilepsy….it’s about a young girl living with epilepsy not able to attend college….it’s about a young woman crying because she needs to find a way to pay for her seizure medication…it’s about a young woman wanting to drive but cannot because she just had another seizure…it’s about that same young woman wondering if she pretty enough after she had another seizure or if she is good enough….it’s about a young women with epilepsy wanting to have a baby but afraid because she doesn’t want to have her baby exposed to her anti-seizure medication…it’s about the woman living with epilepsy that just had a seizure in front of her children and they are scared….it’s about a women living with epilepsy that is afraid to leave her abusive marriage because she fears her epilepsy will be used against her and she will not be able to have her children live with her so she stays in the bad marriage, it’s about the woman going through menopause scared that her seizures will get worse…it’s about the elderly woman that has seizures and now she wonders what will happen to her and who will care for her…. Real world changers face these moments everyday in their practice and do not turn away but help these female patients while trying to fight the insurance companies, rising cost of epilepsy drugs from the pharmaceutical companies, and fighting the hospitals to get better equipment as well as demanding more time with their patients. This past December, we gave out our first research award named after Dr. Kimford Meador, our founding board chair. Our current board chair and my neurologist, Dr. Gregory Mathews, and I presented the award at the American Epilepsy Society (AES) in Washington, D.C. It was a moment that I will never forget as we presented the award with Dr. Meador sitting in the front row, in a room that was standing room only packed full of doctors. Dr. Mathews and I sat in the front row talking before we presented the award, saying look what came out of us meeting 11 years ago in a small doctor’s office. I want to encourage the doctors and patients to join together not only for your healthcare but also for your community. How can you be a world changer? Here is part of the speech from our presentation. Please take some time to read it and share about this award with others.
“As doctors you never know when you walk in a room to see an epilepsy patient the impact that you will have on their lives or the lives of the people that your patient will come in contact with….There are two doctors that forever changed my life as an epilepsy patient and the lives of millions of other women by impacting my life, one is Dr. Gregory Mathews, my neurologist of 11 years, the first neurologists that took the patient-centered approach with me. When I saw Dr. Mathews at Vanderbilt Hospital in Nashville, Tn 11 years ago he was an Assistant Professor of Neurology. The first time we met he said “ I am not the expert you are, You have epilepsy. I can read about, study about it and do research on it but you are the one that lives with epilepsy daily.” Dr. Mathews began educating me on my epilepsy and started me on the journey of continuing to educate myself. Dr. Mathews then switched my anti seizure medication to a safer medication and walked beside me through many difficult times…. Dr. Mathews has become a friend over the years and is the current board chair of My Epilepsy Story.
The second doctor is Dr. Kimford J. Meador. Dr. Meador is a behavioral neurologist and epileptologist. His research is primarily focused on the behavioral and cognitive effects of epilepsy and its treatments. For over 15 years, his research group has studied the neurodevelopment effects of antiepileptic drugs, which has led to changes in FDA warnings. Six years ago this December, I came to AES as a patient seeking answers for my young son, Samuel, he had been exposed to Valproate in utero. I sat in the back row of a meeting much like this one where Dr. Meador was presenting on Valproate exposure in pregnant women. Our chance meeting turned into a lifelong friendship… he has been my mentor, become like a father to me, he has helped me through my intense guilt and heartache of taking this medication. Dr. Meador has listened to me cry and ask the question why my son, why Samuel? I am in the 70% of people with epilepsy that is supposed to be unaffected by epilepsy because I am seizure-free. He has walked by my side through the starting My Epilepsy Story while being a mom to three young children one of whom has autism because of my medication. Dr. Meador is also the founding Board Chair of My Epilepsy Story. My Epilepsy Story is a nonprofit for Women and Girls living with epilepsy as well as the children impacted by their mother’s anti seizure medication. I have had the opportunity to see Dr. Meador’s passion to help Women with epilepsy and his anger when the research funding is running low or nowhere to be found. I knew from the beginning that when My Epilepsy Story began funding research awards the award would be named after Dr. Kimford J. Meador.
At My Epilepsy Story, we believe it is imperative for young investigators to learn from the top neurologists in Women’s Health in Epilepsy and to continue in the field of research in Women’s Health in epilepsy. At My Epilepsy Story we ARE Advocating, Researching, and Educating for women and girls living with epilepsy in every corner of the world. We have in my opinion the top doctors on our board and our advisory board such as Dr. Torbjorn Tomson, Dr. Cynthia Harden, Dr. Gregory Barnes in addition to Dr. Meador and Dr. Mathews. We also have Dr. Kay Solar who is an OB/GYN and Dr. James McAuley who is a doctor of pharmacy, Melanee Newman an Registered Nurse and Lauren King a Nurse Practitioner. We believe that it is imperative to be patient- centered with these female patients and to look at them as a whole patient and not look at them as just as someone with epilepsy. My Epilepsy Story offers the medical community the patient perspective and what the patient wants for their healthcare. In addition, we are an organization where you can send women and girls living with epilepsy to learn about their epilepsy and find a community of others to walk through their journey epilepsy. We realize that EVERY patient is affected by their epilepsy whether they are having seizures or are seizure free. So I want to remind each of you that you need to stop and pause before you enter that room to see that woman or girl living with epilepsy, remember why you went into medicine, remember to discuss AEDs and pregnancy annually with them if they are in the reproductive years and remember that you too can be a world changer just like Dr. Kimford J. Meador and Dr. Gregory C. Mathews.” ~Brandy Parker-McFadden
I am blessed to have the two amazing doctors in my life personally and professionally. Here at MES, we are thankful that they are paving the way to show the world that you can change the lives of women and girls living with epilepsy.
To read more about the Kimford J. Meador Research in Women with Epilepsy Award, please follow this to the Meador Award