Barbi Buchanan was inspired to become a monthly donor to CURE Epilepsy following her daughter Bryn’s diagnosis at 12 years old. A few years later, her family was dealt another blow when Barbi was diagnosed with treatment-resistant epilepsy at age 58. Although her symptoms are not as severe as Bryn’s, she lives every day with the lifestyle changes brought on by epilepsy. Here, Barbi shares her story and why she’s committed to supporting CURE Epilepsy to fuel progress toward a cure.
How has your experience as a patient and a parent shaped your perspective on epilepsy?
Like any parent, I worry most about my child. John and I have adjusted to what we call an alternate universe of parenthood. We’ve realized Bryn’s life journey might change. It is important to us that she experience life fully, with our support. That means allowing her to ski or horseback ride or travel – activities that parents don’t typically try to restrain. Today she’s independent, but there’s not a day that I don’t worry about her.
Having epilepsy myself helps me better understand what Bryn goes through and her limitations. My independence continues to waver as my health changes. I was finally able to drive about three years ago, after being seizure-free for two years. Then this July, I started having seizures again.
“Donating to CURE Epilepsy is our family’s way of directly funding a cure and supporting our epilepsy community…. I’ve experienced caring for a child and supporting a young adult with epilepsy firsthand, and this disease must be stopped.” –Barbi Buchanan
Why did you first give to CURE Epilepsy? And as a monthly donor, why do you keep giving?
Donating to CURE Epilepsy is our family’s way of directly funding a cure and supporting our epilepsy community. Epilepsy seems to strike our most vulnerable – our children – most often. I’ve experienced caring for a child and supporting a young adult with epilepsy firsthand, and this disease must be stopped.
What part of CURE Epilepsy’s work inspires you most?
Researching for a cure is my quick answer. But I think raising awareness about epilepsy is also critical to the day-to-day lives of those of us with epilepsy. When we received Bryn’s diagnosis, we knew nothing about it. Was it curable? Was it like MS? What would her life look like? We had to find our own information and community around this disease. Now, I never shy away from speaking about epilepsy.
What message about epilepsy would you share with others?
I would start by saying that epilepsy kills. This disease needs to be taken seriously by patients and caregivers, and also by those in positions of influence who can move us closer to a cure. But I’d also tell patients that epilepsy doesn’t have to be a death sentence. For many, treatment, lifestyle changes, and careful monitoring will lead to a full life. It’s a different life than we imagined, but it’s a happy one