The following is a press release from Volunteer State Community College about an upcoming speaking engagement with Brandy McFadden and My Epilepsy Story.
Brandy McFadden could see that her son Samuel was having problems. He wasn’t developing verbal skills and social skills as one might expect. That concern began her journey down a medical investigation path that, eventually, and painfully, connected to her own health challenge- epilepsy. Years later, her story has become a passionate warning for women with epilepsy and formed the foundation of a nonprofit advocacy organization.
“Samuel is ten-years-old,” McFadden said. “Two years before he was born they had just started to realize that there was a problem.”
The problem was with the epilepsy medication that was helping McFadden control her seizures. It worked so well that she has had only three seizures in her entire life. However, the effect on her unborn son was dramatic.
“I’ve always said that epilepsy didn’t impact my life. And all that changed with Samuel. Medication can pass from the mom to the baby and with some epilepsy medication that can result in low verbal IQ. He can talk about certain things and be very knowledgeable, but with social skills there are things he’s just not getting.”
McFadden began to attend epilepsy medical conferences to get more information. At one such event, she met Dr. Kimford Meador, a researcher who had been studying the effects of epilepsy medication during pregnancy. When McFadden told her story and said her son’s age, the doctor looked crestfallen. The researcher realized that he had begun to see a problem in preliminary research before Samuel was born. It took several more years for the results to be conclusive and those results widely communicated.
Parker has been telling her story. Now the Vol State student has started a nonprofit to reach even more people. It’s called My Epilepsy Story.
“We’re the only organization focusing on this,” she said. “It’s about educating yourself.”
The board for the nonprofit is made up of the doctors and researchers who have worked with McFadden over the years, including Dr. Meador and the ob-gyn and neurologist who treated her and her son.
“When I formed my board I wanted people who had a personal connection to my story. I think there needs to be a lot more communication about this problem between patients, ob-gyns and neurologists.”
Dr. Meador encourages women with epilepsy who are considering pregnancy to develop a treatment plan for their medication, well before they get pregnant. Certain drugs and certain drug combinations have been shown to be more dangerous than others.
McFadden says that raising children, attending college and running a nonprofit is daunting, but she has found ways to juggle those responsibilities.
“My education is going to look very different from other peoples. I’ve had wonderful professors that have been very helpful while I try to return to school, run a nonprofit and raise three kids.”
She is encouraging other mothers with epilepsy to speak out with a website, www.myepilepsystory.org. She said that sharing is important not only for the public information, but also for doctors and researchers, so that they can put a human face on the potential problems with epilepsy medication during pregnancy.
“All the stories are unique.”
McFadden will share her story during a free discussion on the Vol State campus in Gallatin on November 14 at 12:45 p.m. in the Thigpen Library at 1480 Nashville Pike. The public is invited to attend.