A local mother whose son has suffered from epilepsy since infancy is teaming up with members of the community to raise awareness and funding for what is described as a “stealth disease.”
“My son, Seth, is 11 years old now and in the past 10 years I have learned a lot about epilepsy, trying to help control his seizures. And what I have learned is this is a disease that affects so many people, but epilepsy research is very underfunded,” Joy Buzzell of Londonderry said. “So few people know about epilepsy and understand the facts about it and how devastating it can be, and how common it is.”
Some of those facts include the following: One in 10 people will suffer a seizure in their lifetime, and one in 26 people will develop epilepsy. More people live with epilepsy than with autism spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy combined. Up to 50,000 deaths occur annually in the U.S. from seizure related causes – that’s more than deaths from breast cancer.
And one of the facts of greatest concern to Buzzell is that each year, the state spends $30 billion on medical research, but only half of one percent is spent on epilepsy research.
“The facts are scary and shocking,” she said. “Seth is on five seizure medications and he still has daily seizures. It’s still so hard to control. I’m doing this for more awareness to lead to more research to find a cure.”
Buzzell gave purple ribbons to the Police and Fire Departments in Londonderry and Hooksett, where she works, to wear on Epilepsy Awareness Day March 26.
Londonderry Police additionally plan to hang the purple ribbons on their cruisers.
And to raise funding for epilepsy research, the New England’s Tap House Grille in Hooksett will serve a purple martini they created in honor of Epilepsy Awareness Day, with $1 of every martini sold to benefit the Epilepsy Foundation New England.
“Everyone has been so supportive – the Police and Fire Departments, and the Tap House,” Buzzell said, noting Matthew Thornton Elementary School will be celebrating “Purple Day” at school, and her older son’s art teacher at the middle school will be having students make posters to raise awareness for epilepsy.
“It’s helpful for him to see people supporting the condition his brother has,” Buzzell said.
Buzzell plans to continue promoting Epilepsy Awareness Day and hopes to make its presence bigger each year.
“This is something I can do that’s positive,” she said. “Sometimes, I feel so defeated because everything I give him doesn’t help. But this will, in some way.”?