Philadelphia man uses 50 years of epilepsy experience to help others

PHILADELPHIA (WPVI) -- For 50 million people worldwide, epilepsy is a daily reality. But there are many misconceptions and even biases attached to the disorder.

A doctor shares the latest insights, while a Philadelphia man draws on 50 years of experience and explains why patients shouldn't keep it a secret.

Manny de la Hoz's first seizure came out of the blue at age 21.

"My light just went out, and the next thing I knew is I woke up with lumps all over my head," Manny remembers.

"Thirty-eight days after that, I had three more," he adds.

Neurologist Mercedes Jacobson of Temple Health says seizures are signs of electrical malfunctions in the brain.

"Neurons connect in a way they're not supposed to and discharge together in ways that they're not supposed to that disrupt brain function," Dr. Jacobson explains.

There are many causes: genetic disorders, severe head injuries, strokes, aneurysms, abnormal blood vessel formations, brain tumors or cysts, infections, or birth injuries.

Diagnosis starts with a thorough medical history, followed by several tests.

"Including the brainwave test, which is the EEG test, and pictures of the brain, which would include a CAT scan and, for most people, an MRI," Dr. Jacobson says.

She says sometimes, doctors can figure out where the seizures are centered.

"If somebody tells us that their seizures begin with numbness in their left hand, then that would suggest that perhaps the seizures begin in the right side of the brain," she notes.

Despite injuries suffered during major seizures, Manny hid his epilepsy from all but his family.

That ended one day, while hosting his local radio show.

"I had a grand mal seizure, but I had the microphone open," he says. "Now, everybody was listening to my daughter crying behind me because I was having this issue. So after that, it was like, well, okay, well now everybody knows."

With his secret out, Manny became a speaker to help other patients and educate the public about this misunderstood disease.

"At one point, in some places in the United States, people with epilepsy could not be married," Dr Jacobson says.

"I love very much that other individuals that have the same problem will benefit from my 50 years of experience," Manny says with a smile.

He tells patients that taking medication on schedule and educating oneself and family is essential.

With them, he's still working as an engineer at age 71.