Meet Jenty: A story about strengthening the well-being of persons with epilepsy in South Sudan

Most mental health conditions are treatable although most communities associate it with evil spirits and bad omen. In the health sector, mental health is often neglected, and very little attention is paid to it. With proper treatment and care, people with mental disabilities can be very productive in society. There is a need for the community to embrace mental illness and the policymakers to ensure that mental health is integrated into routine health services. Here is Jenty’s story about how experiencing discrimination because of her epileptic disorder impacted her mental health and well-being, and how being afforded proper care made her live a normal and happier life again.

Jenty John is a 19-year-old mother who lives in Timbiro village in Yambio town.  For many years Jenty suffered from epilepsy that greatly affected her well-being.  The attacks caused many injuries to her body because she fell whenever she got an attack. She recalled her first episode of epilepsy attack when she was 14.

“It started on a calm morning at school. “I didn’t know what happened and how it happened, but I woke up and found myself surrounded by students all feeling sorry for me,” she said.

Not knowing what it was and with confusion, Jenty grabbed her books and went home. She did not share the incident with her family.  A few hours later, Jenty experienced another attack that scared her family. They didn’t know what it was, and this was the first time they had seen this.

“As we all gathered for supper, I had another episode.  When I woke up, I found my mother and siblings crying, not because they thought I was dead, but deep down they already knew how useless I had become,” Jenty recalled.

In Jenty’s community, people with epilepsy are stigmatized, discriminated against, and excluded. There is a belief that epilepsy is contagious, so people discriminated against her.  “They feared that I may make them sick. Some people believed that I had evil spirits or had been bewitched,’’ she said.  

Jenty attempted to continue going to school, but as the attacks become more frequent, she decided to drop out of school. “The children often mocked and threw insults at me. The pressure became too much for me to bear, so I stayed home,” she lamented.

My family isolated me. The children were not allowed to eat and play with me, traumatizing me even more.  I felt rejected and discriminated against. Some people didn’t want to be around me for fear that I may get an attack and fall on them.

Jenty felt helpless, isolated, and neglected.  Everyone, including some of her family members, did not want to associate with her. People stayed away from her. She didn’t have friends. These made her feel unwanted and lonely. “My family isolated me. The children were not allowed to eat and play with me, traumatizing me even more.  I felt rejected and discriminated against. Some people didn’t want to be around me for fear that I may get an attack and fall on them. Also, seeing someone having an attack can be a terrifying experience,” she said.

The nearby hospital had no department to support neurological disorders, or healthcare workers to handle such challenges. There were no medicines for people with neurological conditions like epilepsy. Most health workers were not trained on these issues. There were no medications for the management of epilepsy. There was no mental health department to handle special cases like epilepsy. Jenty did not know what to do or where to get treatment.  She spent a lot of money on traditional healers, but there was no improvement. She was traumatized, and this “resulted in a man taking advantage of my condition by getting me pregnant and running away. Epilepsy seized my future and made me a single mother because no man wishes to live with an epileptic woman,” she said.

Gender Equality and Social Inclusion

World Vision prioritizes the Gender Equality and Social Inclusion (GESI) Approach that promotes equal and inclusive access, decision-making, participation, systems, and well-being of the most vulnerable; transforms systems, social norms, and relations to enable the most vulnerable to participate in and benefit equally from development interventions, builds individual and collective agency, resilience, and action and promotes the empowerment and well-being of vulnerable children, their families and communities. The goal is to achieve sustained, transformational change at the individual, household, community, and societal levels so that all persons can enjoy fullness of life.[1]

The Prioritizing GESI in Health Interventions Project in Western Equatoria sought to reach vulnerable groups such as adolescent girls, persons with disabilities, people living in remote areas, those living in poverty, the elderly poor, people living with HIV/AIDS, refugees, and other vulnerable groups. The objectives were to integrate GESI into health, build the capacity of healthcare providers, ensure equal access to and use of health services by the poor, vulnerable, and marginalized population, and improve the health-seeking behavior of the vulnerable and marginalized populations so they can obtain health services based on their rights.

To address health conditions such as Jenty’s, the project established the mental health department at Yambio State Hospital. It also trained health workers on mental health and provided equipment and medical supplies for the management of patients with mental problems. To ensure the community gets to know about the new services, health awareness campaigns on mental health were conducted through radio, community dialogue sessions, open-air mass campaigns, and during routine outreaches in the community, and health discussions at the health facilities to educate community members that mental health problems can be treated at the hospital. The campaigns also challenged the stereotypes and negative perceptions that mental illness and other chronic illnesses, such as epilepsy are caused by witchcraft, evil spirits, or a curse. To strengthen the health system, the project trained health workers on how to effectively identify and manage illnesses.

The project procured mental health medications including those for the management of epilepsy and delivered them to Yambio State Hospital. The community structures such as Boma health workers, mother-to-mother support groups, health facility management committees, and male champions were trained and used to disseminate information about the existence of the mental health unit. Jenty learned about the Mental Health Department through the community awareness campaigns that were conducted in her village. She learned that epilepsy is a medical condition that can be treated, and it is not something caused by evil spirits.

GESI Impact

Jenty went to the hospital, and she received epilepsy treatment. When she started taking the medications, the attacks reduced and eventually stopped for as long as she was on the medication. “Epilepsy no longer throws me down. I may feel a slight headache for a few minutes but never get an epileptic attack,” said Jenty.

Jenty feels happy because she is now able to travel and participate in various economic and social activities without fear that she may get an attack. Her overall well-being has improved, and she feels confident and valued because people do not isolate her anymore. “I can proudly say that my life is back and excited because I eat and share everything with my family again after all these years of isolation,” said Jenty.  

I feel I am now part of my community

Her family is no longer discriminated against because of her condition. People no longer take advantage of her. She now lives a normal life.

Jenty is now able to engage in productive life activities such as farming to put food on the table for the family. She can engage in other social activities such as going to church and traditional gatherings. ‘‘I feel I am now part of my community,’’ said Jenty.

All mental health conditions are treatable although most communities associate it with evil spirits and bad omen. In the health sector, mental health is often neglected, and very little attention is paid to it. However, this project has demonstrated that even people with mental disabilities can be very productive in society as long as they are treated. There is a need for the community to embrace mental illness and the policymakers to ensure that mental health is integrated into routine health services.

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The Prioritizing GESI in Health Interventions Project is funded by the Health Pooled Fund, a consolidated fund from the British Government’s Foreign, Commonwealth and Development Office, the Government of Canada, the Swedish International Development and the United States Agency for International Development, European Union and the Global Alliance for Vaccines and Immunization. The development of this success story was part of the GESI Transform Project funded by World Vision U.S.

[1] World Vision GESi Approach and Theory of Change

Story by: Scovia Charles, World Vision South Sudan Communications Coordinator; Stephen Leonard Epiu, World Vision South Sudan Health, Nutrition, and Water, Sanitation and Hygiene Technical Manager; Leticia Nkonya, PhD., World Vision United States GESI Senior Technical Advisor; and Vicky Poni Mikaya, World Vision South Sudan GESI Coordinator