SARASOTA, Fla. - March 26th is purple day for epilepsy awareness. The CDC estimates more than two and a half million people in the U.S. suffer from the neurological disorder.
Epilepsy affects more people than breast cancer, Parkinson's disease, or Alzheimer's disease. Yet there still a stigma attached to seizures.
There are only two epilepsy specialists on the Suncoast, and now one local family, their foundation, and a doctor of the Cleveland Clinic are making a difference.
Bruce Chapnick wears the color purple for Global Epilepsy Awareness Day to commemorate and honor those with epilepsy and raise awareness of the neurological disorder that claimed a loved one’s life. “Our son Josh had epilepsy since he was a junior in high school. In June 2008, he had a fatal seizure and hit his head.”
His first seizure was on the teen soccer bus. His friends were supportive at first. “As soon as soccer season was over, the phone stopped ringing; they quit calling, quit asking to do things with them, they were fearful of being around him.”
Epilepsy doesn’t discriminate and can occur for a variety of reasons.
“You can have a serious head injury, a brain tumor, or a brain infection can cause it. In young children you can have a genetic disease that can cause it or a brain malformation,” says Dr. Ajay Gupta with Cleveland Clinic.
Epilepsy may develop following stroke or another brain disease. Medications or surgery are treatment options, and there are pacemakers and RNS for non-candidates. “Responsive Neuro Stimulation, it’s a device that can be implanted and that can trigger a response that senses a seizure.”
RNS may stop seizures before they happen, and there are motion detectors. “You can have one that's a watch, and there's one that fits underneath the mattrress that will detect when a seizure is occurring when you are having them at night.”
But not in time to help the Chapnick’s only son. Now he and his wife Sandy continue building Josh Provides, an epilepsy assistance foundation to help others with epilepsy.
“When you lose your parents, the English word for that is you become an orphan. When you lose a spouse, you become a widow or widower. When you lose a child, there is no word in the English language. There is such a hole in your heart that you live with it for a very long time.”