Phyllis Johnson had her first epileptic seizure in 1968. She
told members of the Chadds Ford Business Association last week that she didn’t
know at the time what had happened or how she found herself half in and half
out of the shower.

She’s learned a lot since then.

Johnson, a Birmingham Township resident, is now a volunteer
with the Epilepsy Foundation of Eastern Pennsylvania. She focuses on raising
money and awareness, speaks to civic groups and has her own Web site www.epilepsytalk.com.

Epilepsy is a misfiring of the neurons in the brain. That
misfire leads to seizures that may last for seconds or hours. Some can be
fatal.

According to Johnson, it’s “a stealth disease that people
don’t see. There’s still a stigma and it receives one quarter of one percent of
federal health funding.

“There are a lot of misconceptions … a lot of
misinformation. And the Epilepsy Foundation of Eastern Pennsylvania is in dire
need of money. The Juvenile Diabetes local office moved to larger quarters to
accommodate their expanding staff, but we had to cut people.”

According to the Epilepsy
Foundation of America Web site, she said, up to 50,000 people will die of
seizures this year, and people with epilepsy have a mortality rate two to three
times that of the general population. Their risk of sudden death is 24 times
greater, she said.

“I lost a friend … a 17-year-old
boy. He died from a tonic clonic seizure. That’s when you stop breathing, then
your heart stops.”

Johnson said the boy was alone at
the time and there was no one to get help to put him on oxygen.

Johnson herself had a near-death
seizure that lasted five hours.

Among the more common seizures are absence seizures that
make a person seem spacey or not paying attention, she said. Other seizures are
cluster seizers where there are a series of seizures that can last for 15 to 30
minutes.

The frequency of seizures is different for everyone, she
said.“I used to have four seizures a day. There are people who have one or two
seizures a week. There are people who seizure after seizure after seizure.”

Many epileptics can’t work or drive, she said, adding that
she testified before the EEOC about the Americans with Disabilities Act because
people with epilepsy aren’t included in the disabilities act. Which means that
an employer can fire them without just cause, she said.

Johnson wants people to know what should be done if they see
someone having a seizure. Lay them on their left side and place something soft
under their head and give them room. Don’t put anything in their mouth. “That’s
the worst thing anyone can do.”

Call 911 if the seizure is violent or lasts 15 minutes of
longer.

Her basic message is: “The Epilepsy Foundation and people
who have epilepsy need advocates and support. The foundations themselves need
money for education and research.”

To donate, go to the Epilepsy Foundation of Eastern
Pennsylvania’s Web site.