My childhood was healthy, until I had my first tonic-clonic seizure at the age of 15. Luckily, I am fortunate to have only had three seizures since being diagnosed. At the time, I thought that I was an informed patient about epilepsy. I had responded to treatment with medication, and epilepsy didn’t affect my life, except for minor side effects through the years.
Everything changed more than 12 years ago, when I gave birth to my first child. Epilepsy began affecting my life on a daily basis, and I realized how uninformed I had been about epilepsy. Research now shows that the anti-seizure medication I was prescribed, while pregnant with my first child, can cause developmental delays, characterized by low verbal IQ in children when exposed in utero. I was successful in that my seizures responded positively to epilepsy treatment, but I was not prepared for how my epilepsy would impact my son’s life. At 12 years old, my son, Samuel, was diagnosed with Autism Spectrum Disorder. He spent countless hours in occupational, physical, and language therapy. I grapple daily, with the feelings of how the anti-seizure medication I took to control my seizures while pregnant, has changed my son’s life.
Although I am in the group of people with epilepsy that is responding to treatment, I realize the importance of cutting-edge epilepsy research. Epilepsy research falls far behind that for other neurological diseases. My hope is a cure for epilepsy. Until that time, the more data-driven research we have, the better our chances of having more effective epilepsy treatments and fewer side effects from anti-seizure medications. I also realize that even though I am in the group that is responding to medication, at any point I can move to the group that is not responding to anti-seizure medication.
My reason for starting My Epilepsy Story is to focus on women and girls with epilepsy as well as the children that are impacted by their mother’s epilepsy. Women and girls are the most vulnerable members of society. When a woman or girl is diagnosed with epilepsy, their vulnerability increases. I believe you cannot focus on women with epilepsy, without following their children and other girls that have been diagnosed with epilepsy. When researching epilepsy advocacy organizations, I did not find any that focused on these two groups together. This compelled me to step up to fill the void.
My passion is to advocate for cutting-edge epilepsy research, educate doctors about the patient perspective, educate patients about their epilepsy, and to raise funds to do this, while sharing my personal story. I have an interest in women’s health issues, specifically related to women living with epilepsy. As a woman living with epilepsy, I can testify that epilepsy not only impacts the woman but her entire family as well. Women and girls’ health issues related to epilepsy need to be addressed globally. In addition, I have an interest in the FULL IMPACT that anti-seizure medications have on ALL people living with epilepsy. Please join with me to help Bridge the Gap for women and girls diagnosed with epilepsy. Together We Can!
- Consultant, Epilepsy Patient Advocate,
“Cognitive AED Outcomes in Pediatric Localization Related Epilepsy (COPE).” Patient-Centered Outcomes Research Institute
- Testified before the Institute of Medicine on Epilepsy with personal epilepsy story (2011)
- AES Epilepsy Leadership Council (2012-present)
- MONEAD Project
- PCORI Ambassador (2014-present)
- Grand Rounds Presentation throughout the country (2014-present)
- American Epilepsy Society (AES) – (2012-current)
- AES Vision 20/20 Group – (2011-2015)
- AES Epilepsy Leadership Council – (2015-present)
- PCORI Ambassador – (2014-present)
- American Academy of Neurology (AAN): Epilepsy Quality Development Work Group – (2017-present)
- American Academy of Neurology (AAN): Women with Epilepsy Guideline Work Group – (2018-present)