Changing Misconceptions About Epilepsy
In May, 13-year-old Wendel’s grandmother brought him to Project Medishare’s mobile clinic for hurricane-affected families in Saint Helene, located near Les Cayes in the South. She had heard from others in the community that we were giving multivitamins to children. Upon arriving at the church where the mobile clinic was being held, it was immediately apparent to our medical team that Wendel needed much more than multivitamins.
Wendel was unable to walk or sit-up on his own. He was completely unresponsive to questions and unable to speak. In an attempt to elicit a response, the doctors at the mobile clinic asked him to smile if he could understand them. Much to everyone’s surprise, including his grandmother, the teenager flashed a megawatt smile that lit up the room.
After further examination, as well as questioning his grandmother, doctors learned that Wendel was experiencing frequent convulsions, and his grandmother noticed a drastic change in his behavior. They determined that Wendel was exhibiting symptoms of epilepsy. The problem: His grandmother didn’t believe it. She believed he was possessed by a demon or a Voudou spirit.
“He’s possessed,” she told doctors. “It’s terrible. We pray for him almost every day with the community but it’s not helping. This demon is not letting go of my boy.”
Anyone who has worked in or around the health care field in Haiti for any amount of time, has likely heard possession as the attributed cause to any number of physical and mental ailments. No disease however, gets this misdiagnosis as often as epilepsy. The violent seizures resemble the shaking and quaking that many believe signify possession by a loa (spirit) during a Voudou ceremony. As such, epilepsy is one of the most misunderstood illnesses in Haiti.
It is estimated that 10 percent of Haiti’s population is affected by epilepsy — the global average is one percent. Despite this relatively high percentage, receiving an accurate diagnosis and an appropriate treatment plan are inaccessible for most Haitians — especially poor families living in rural areas. This inaccessibility to proper epilepsy treatment is just one symptom of the larger issue of Haiti’s weak healthcare infrastructure.
“I’d say that this is a very typical case,” said Project Medishare’s Program Coordinator Dr. Farah Alfred. “I’d also go so far as to say that around 99% of epilepsy cases in Haiti are thought to be spirits. And unfortunately, it’s not seen as a real problem in Haiti. There are no major awareness campaigns being done and certainly not enough clinics and doctors to treat those that need it the most.”
As doctors discussed medicines to treat Wendel, his grandmother was skeptical that it would help. She thought his only source of help would come from prayer. After much discussion and education, Dr. Alfred convinced her to try the medicine, in addition to prayer.
“I knew he would get better with the medicine, but I wasn’t certain if I had really managed to convince the grandmother. I knew she was very superstitious and wasn’t sold on the idea that Wendel was sick and not possessed. I wasn’t sure if she would really give him the medicine. I could only hope that she would listen to us and that the next time I would see Wendel that he’d be better.”
Several weeks later, at our third round of mobile clinics in July, Wendel and his grandmother returned for a follow-up visit as scheduled.
“When I got to [the site] I knew Wendel and Jacqueline were supposed to be there. I hadn’t had any news of them though, so I was looking for a young boy lying down,” said Dr. Alfred. “I hadn’t realized that the young boy running towards me was Wendel! It was only when he ran up and hugged me that I saw it was him.”
Wendel’s grandmother was excited to share his progress over the last six weeks. He hadn’t suffered a single seizure since he started taking his medicine, and he was expected to return to school this fall. Wendel was also able to enjoy childhood activities again.
“I can play soccer again,” he said. “I don’t play a lot because I’m still a little scared I’ll get sick again but I can run a little bit now. I couldn’t do that for a long time.”
Dr. Alfred was confident that medication would improve Wendel’s quality of life, but she was surprised to see the way it also changed his grandmother’s life.
“[Wendel] is the center of [his grandmother’s] universe. She raised him by herself. He’s her only responsibility,” said Dr. Alfred. “She was wondering if it was her fault he was in this condition; if she’d ever be able to chase the evil spirits away from him. So, now, you have a grandmother who is constantly smiling and who is spoiling her grandson more than ever.”
Now that Wendel’s grandmother better understands her grandson’s illness, she educates others in her community about epilepsy.
“Now I know that it is an illness. If it wasn’t, then the medicine wouldn’t have worked. Now, I tell everyone in my community that there’s this disease called epilepsy and that sometimes it’s not a demon that’s taken possession. Sometimes the person is sick and can be helped by doctors.” She continued, “If I hadn’t seen the change in him with my own two eyes, I don’t think I would’ve believed it. I cannot say thank you enough.”