Epilepsy Awareness Month: Locals like Kincaid fight for awareness and legislation
Thomasville’s Toney Kincaid says there’s a stigma around epilepsy that he and others in the Epilepsy Association of North Carolina are working hard to shift. Kincaid, who refuses to let anyone use the phrase “those people,” serves as the CEO of the statewide foundation.
Kincaid wasn’t surprised when he met resistance to the foundation, especially by churches. Despite how "common" the disease is, he points to misconceptions within the Christian community. “Epilepsy, being one of the oldest illnesses in the world, many churches preached epilepsy is a demon possession of the person. This is taught in some Davidson County churches.” Epilepsy of Davidson County started meeting at local restaurants until group members connected with Pastor Aaron Long of Paul's Chapel Church. “I met Pastor Long online and he invited us to come to his church to meet so we did not have to meet in a public place. He was the only pastor who would help us, and we had our first event at the church in 2017.”
According to the National Institutes of Health, epilepsy is a neurological disorder that causes seizures or unusual sensations and behaviors. It can last several years or be lifelong. NIH calls it “very common (more than three million cases per year in US).” There are no known cures, but treatments are available. Up to 1970 it was legal to deny people with seizures access to restaurants, movies and public buildings.
Now the group is fighting for more than access. Sam’s Law is a bill that would require K-12 schools and UNC system schools to create seizure action plans for students who have seizures.
Davis suffered what appeared to be a seizure at the 4-kilometer mark during the Saturday morning race. {Sams Law/Twitter}.
The plan would include a written statement from a student’s health provider with the following:
The student’s name.
Any seizure medication prescribed.
The dosage and method of administering the seizure medication.
The frequency of administration of the seizure medication.
The symptoms necessitating administration of the seizure medication.
The law was written in memory of Samantha Rose Davis (October 22, 2000 - September 23, 2018), as well as all the children who have suffered from fatal epileptic tragedies while at school. Davis, 17, passed away after competing at a cross-country event in Charlotte. She collapsed at the 4K mark and went into cardiac arrest.
Advocates say the disease can be lonely, as most with epilepsy cannot drive due to seizures and strokes. As such, according to the foundation, students with seizures and strokes have a 20 percent higher suicide rate.
A round of epilepsy-related seizures and surgeries almost caused Kincaid to lose everything - his job, health insurance, driver’s license, self-esteem, even his will to live. By 1988, his epilepsy was causing upwards of 3000 seizures a month and doctors feared he didn’t have much time left. No matter the challenges, Kincaid never lost his family or his faith. Now, that faith inspires others and motivates his partnership with Pastor Long and Paul’s Chapel Church to host fundraisers for Epilepsy of Davidson County.
Life got better for Kincaid after he underwent an experimental procedure that involved implanting a cookie-sized device below his left collarbone. Kincaid describes it as “a pacemaker for the brain.” Over a nine-month period, this miraculous treatment worked its wonder of wonders, and by January 1990, Toney and his seizures stopped.
The life-changing opportunity inspired Kincaid to form Epilepsy of Davidson County in 2016, a 501(c)(3) in order to raise funds and awareness for fellow epilepsy patients, research and treatments. His mission for the organization is simple. “It is my goal to speak for those who cannot, stand for those who aren’t able, educate those hurting, bring education to the unlearned, give love and support to the despaired, be a light for those living in the shadows and be a friend to those who feel abandoned,” he declared.
Kincaid says he does it for the children and parents battling the diseases and public stigma. “Epilepsy being the most bullied disease in the world with a suicide rate 13 times higher than other illnesses. Children are made to feel as social misfits and worthless and isolated.” In addition to being founder and CEO of Epilepsy of Davidson County, Kincaid serves as president of Epilepsy Association of North Carolina.
In a statement to the foundation, Kincaid said, “I know I have epilepsy and I know it cannot be cured but it is controlled. Many think, and I am grateful, controlling your epilepsy through medications is a cure but there is a world of difference. When my seizures were at their worst, I felt as small as a grain of sand, because this illness, you go through it alone. But I now see there are people who know this illness and can reach out to others and say, ‘I care and understand.’ For too long we have been on the path fighting alone but this thinking needs to change. If you truly care about someone, you do not sit still and stay speechless. I urge everyone to search your soul and ask yourself if a change is needed and is it time you get involved? For me, I will stand up even if I have to stand alone.”
He isn’t alone in this fight. The foundation has more than 17 chapters across the state. For information, visit epilepsyassociationofnc.com/tag/epilepsy
