Epilepsy: Stigma, Abandonment Just as Grave as No Treatment

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MSF works with the local health workers in five health facilities in Montserrado County to provide the training, medications and clinical supervision for these health workers to treat patients with epilepsy, as well as patients with mental health disorders. (Photo: Bush Chicken)

MSF shares knowledge from collaboration with five health facilities in treating epilepsy patients

One of the world’s most common neurological diseases, epilepsy affects nearly 50 million people, but in low-income countries more than 75 percent of people with epilepsy do not have access to treatment, according to World Health Organization figures. But that’s only part of the story, according to an interview by MSF, shared with the Daily Observer, ahead of International Epilepsy Day, which occurs every year on February 10.

The other part of the story is that, as with other neurological and mental health disorders, the stigma, abandonment and physical hurt suffered by people in Liberia living with epilepsy have compounded the conditions of patients. Such sufferings are usually external, arising from apparent fear and lack of knowledge on on the part of family members of patients or members of the general public, especially during epileptic seizures. This, MSF has been working to address by empowering families and communities with knowledge of how to care for patients and help them get access to the right treatment.

In the interview, MSF Mental Health and Epilepsy Supervisor in Monrovia, Emmanuel Ballah, describes the challenges that people face with epilepsy as ‘grave’ and said MSF is working with families, communities and health facilities to treat patients.

According to Mr. Ballah, “Many of the patients that we see have serious problems from neglect and stigma because people mistakenly believe that Epilepsy is a contagious disease, and this is especially true for patients who have convulsions throughout the day because of the continuous seizures.  They are not able to do anything for themselves, they lack self-care, and family members fear them.”

He said a patient who was been abandoned by his relatives is injured due to falling, and no one cares for him because they are afraid of catching his condition. This is something he said they are continually working on in explaining epilepsy to a person’s family and community members.

“In late January we had a community awareness event in the West Point township of Monrovia, with more than 50 community leaders, imams, pastors and school principals. Our health volunteers put on a drama to talk about what happens when someone has a seizure and other people are not willing to help them, because they are afraid”, Mr. Ballah narrated.

Mr. Ballah expressed that People share some myths that explain why they are afraid of epilepsy.” One person in the community said when a patient has a seizure; their saliva is like a virus. So these are the beliefs which make people so often to keep away from the victim.”  He, however, said people appreciate the MSF for having a good discussion with them in communities because they are able to understand how people develop epilepsy and how it is not passed from person to person. They learn how it is treated, and how they can encourage people with epilepsy to seek treatment.

MSF works with the local health workers in five health facilities in Montserrado County, including the West Point and several other areas in Monrovia to provide the training, medications and clinical supervision for these health workers to treat patients with epilepsy, as well as patients with mental health disorders.

The Organization is also working with teams of psychosocial workers and government community health volunteers to explain epilepsy to a patient’s family and community, advocate for their inclusion in school and other normal activities, and help people understand that people with epilepsy are not a danger to other people.

Mr. Ballah added that recently four children were expelled from different schools because of the stigma of epilepsy.

“In Liberia, health workers often think that when you are epileptic, you can be treated with phenobarbital. However, not everyone is treated successfully with Phenobarbital,” said Ballah.  He explained that there are three other medications that may be used, depending on a patient’s condition: Phenytoin, Sodium Valproate, and Carbamazepine. He said the problem is that these medications often cannot be found in other health facilities in Liberia.

Ballah added: “People also go to traditional healers and, because of non-medical explanations of the symptoms they see, they conclude that such a condition signals demon possession and they may take herbs or powders, which are not effective and may be harmful to the patient.  But when people start to take medication from a clinic in our program, they start to get better, and they realize this is better than traditional healing methods.”

“People are so appreciative because we evaluate them, give them the right treatment, and now they are seizure-free. We just had one patient who graduated from the University of Liberia who was taking treatment from other places, buying medication from the drug stores, and he kept having seizures. But after we started to treat him, he is seizure-free for two years now,” he noted.

“We had a new patient yesterday who is about 18 years old and has been having seizures five or six times every day, for years. They have been giving him herbs and other things which do not work. You can see that his social and intellectual development is stunted because he is excluded from everything, but now we are putting him on treatment. This is the most rewarding part of the work that I do. I see that I have a result, which our patients can become functional, and their lives are restored”, He noted.

The program which started since 2017 and still growing, will now have more than 1,300 patients receiving care for epilepsy on a regular basis, and their condition and their quality of life will have significant improvement.

Epilepsy is one of the world’s most common neurological diseases that affects nearly 50 million people but in low-income countries. About more than seventy-five percent (75%) of people with epilepsy do not have access to treatment, according to the World Health Organization (WHO).

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