Epilepsy stigma prevents treatment
BAFUT, CAMEROON (GPI) – Mbolifor Stephanie, 18, dropped out of primary school in grade seven when she found out she had epilepsy.
She says it all began when she had a seizure one day while she was getting ready for school. She says it became hard to go to school because her teachers and classmates were too frightened to help her when she had seizures, thanks to myths that epilepsy is contagious and caused by witches’ curses.
“I dropped out of school and started learning a trade to become a hairdresser,” she says. “But even at work, I was always getting sick and having seizures.”
She says her seizure patterns have changed throughout the years.
“I used to have seizures weekly, but now I get seizures after a month,” she says. “And when I get seizures, it could occur like three times in a day.”
She says the unpredictability of her seizures and the frequency with which they can occur make it difficult for her to hold a job and even to perform routine chores at home.
“I think it’s just best for me to stay at home,” she says. “I do little or no work at home. I don’t cook because I can’t go near the fire.”
Stephanie’s mother, Lum Theresa, says that when Stephanie has seizures at home, the family stays up all night assisting her. Theresa says they put sticks in her mouth to keep her from biting and wounding her tongue.
“It could be very frightful to watch,” Theresa says. “We are all depressed when it does. If one gets a seizure even in church, people walk away because they are afraid that it is contagious and also that if someone who has epilepsy [fits] around them, they will contract the disease.”
Theresa says that Stephanie, a twin and the youngest of her five children, was much slower than her siblings growing up. But she says her family never imagined it was because of a health condition until Stephanie started having frequent seizures and a medical doctor diagnosed her with epilepsy. Theresa says the doctor prescribed her phenobarbital, a medicine that controls seizures, which Stephanie says has been effective.
“Right now, besides [to pick up] the tablets, I don’t go to the hospital,” Stephanie says.
But Stephanie can’t always get the medication she needs because her family can’t afford it. Her mother, a farmer, uses her produce to feed her family and sells the surplus in the village market.
So Stephanie also regularly visits a traditional healer, who Theresa says will get rid of the spell that they believe causes her affliction.
In their village, Mankah Bafut, located in Cameroon’s Northwest region, locals call epilepsy “awonkwoo,” which means “fall and die.” Because of this association of epilepsy with death, Stephanie tries to live life to the fullest. Theresa says her daughter is a young, beautiful girl who loves to socialize and attend social gatherings and parties like other girls in the village.
“As a youth, it is not always easy to restrain her,” Theresa says. “Sometimes her mind is made [up. She] wants to do what she wants and go where she wants to go. She tells me she will eventually die, so she wants to be free to live her life best she can.”