Life with epilepsy 'very different from what you once knew'
CHARLESTON, S.C. (WCIV) - Imagine hearing a thud and finding someone you know laying there convulsing. In the Palmetto State, over 100,000 people have an active diagnosis of epilepsy.
It's a startling statistic and is the reason why Karen St. Marie of Goose Creek has made it her mission to raise awareness.After all, her life changed in a blink of an eye when her son, Erick, was diagnosed with epilepsy six years ago. She quickly realized that there were little resources available in South Carolina to offer support and education to families.
That's when she put aside her job and devoted her full attention to creating S.C. Advocates For Epilepsy in October 2012.
"People assume that once a seizure is over, that life goes back to normal - there are many things that people live with as a result of epilepsy that go far beyond having seizures," she said.
The reality is epilepsy is a constant worry.
"Listening for a strange noise or hearing something fall on the floor makes you run to be sure everything is OK," she said.
She sleeps with a baby monitor to alert her if something happens during the night. Then there's the constant making sure medications were taken and taken on time.
As well as "standing close by while your loved one takes a shower - just in case a seizure should occur," she said.
Of course there is always the worry of when the next seizure will happen and if someone will be around to help when it does.
It's a fear that a person with epilepsy shares among other things.
"As an epilepsy patient, you deal with medications and side effects of those medications. Fear of when the next seizure will happen and if someone will be around to help is a very real issue. Since driving privileges are suspended, dependence on others to get you around or other alternatives must be planned out. Depression can often occur due to decrease in social activities, loss of employment and independence or lack of support from family and friends," St. Marie said.
SAFE is available to teach seizure first-aid to schools, employers, day cares, churches and civic organizations. This program helps epilepsy patients and their family members feel more comfortable knowing that co-workers and friends have been taught what to do in the event of a seizure.
For more information contact Karen@scepilepsy.org or call (843) 991-7144.
There are currently groups in Charleston, Columbia, Greenville, Myrtle Beach, Florence and Hilton Head. The Charleston group meets on the second Saturday of each month at Cathedral of Praise Church, 11 a.m. to 1 p.m., in Building A, Room 103.
Charleston currently hosts a support group open to all epilepsy patients and family members and caregivers at the Ralph Johnson VA Center.Participants have to be over 13 years old. This support group meets on the second Monday of each month, 6:30 p.m. to 7:30 p.m., in the first floor auditorium.
A second support group will be starting soon in the North area.
The organization has sponsored five Hockey Heroes For Epilepsy events and has donated over $25,000 to Research and Education in Epilepsy Fund at MUSC from proceeds of those events.
"Stroll for Seizure Control" is in its second year. It takes place on April 13 at Colonial Lake. The Stroll starts at 9 a.m. and lasts until 1 p.m.
For more information, please email email@example.com or call 843-991-7144.