We are CareEpilepsy Ethiopia
ኬርኤፕለፕሲ ኢትዮጵያ

 

At 30, Kadina Kofto views her epilepsy as a divine punishment, hindering friendships and aspirations for marriage and family. Struggling with self-deprecating thoughts, she battles depression and self-hate. During a seizure, she fell into an open fire, resulting in burns on 7.5% of her leg, forearm, and hands. Scar contractures and infections persist from generalized seizures. With medication, seizures reduced from twice daily to less frequent occurrences. Traveling 21 km for medication refills, Kadina remains hopeful, aspiring to work, support herself, and connect with others to share her journey.

Kadina Kofto

Women with epilepsy in Bonga (Southern Ethopia)

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Aisha's story embodies the devastating impact of epilepsy in rural Ethiopia. Her life took a tragic turn when a seizure left her with severe burn injuries. Believing in possession by an evil spirit, she had never sought treatment for epilepsy. The burn incident also claimed her daughter's life. Aisha, unaware of the dangers, took a sleeping tablet, leaving her daughter to cook. The fatal accident haunts Aisha, triggering questions about preventive measures and systemic failures. Profound guilt and grief underscore the urgent need for improved epilepsy care and support in the community, preventing further tragedies like Aisha's heartbreaking loss.

Aisha

Women living with epilepsy

Epilepsy tragedy, grief, support Aisha.

 

Edamin, a 14-year-old with epilepsy, faces academic stagnation in the 2nd grade for four years due to his teacher's refusal to let him progress. Despite his father's attempts, including exploring private schools, Edamin encounters rejection. Bullying exacerbates his struggles, subjecting him to physical and verbal abuse and labeling him "evil spirited." The emotional toll prompts Edamin to refuse school, deeply saddening his devoted father. This poignant situation underscores the critical need for inclusive education and support for children with epilepsy, emphasizing the harmful consequences of stigma and advocating for safe, accepting environments in schools and communities.

Edamin

A boy living with epilepsy

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16 years old Zeyneba lives at the Catholic Mission in Jimma. She is not attending school but helping out in the mission. Zeyneba says, “I don’t want education, but I want to have a job to support myself and my baby”. She started having seizures at the age of 3 years. This is her third major burn making injera. She has previously acquired burns on her arms and leg. “I know before the devil pushes me to fall”, Zeyneba describes her aura (a sensation where one knows before a seizure occurs). She had a baby girl 2 months ago. Her fiancé left her after seeing her have a seizure whilst pregnant. She was left to work as a maid with several families but sacked when they saw her have a seizure. She does not like to be on the handout. She believes that if she is given a chance to have continuous medication, she will have a normal life. She is worried about what will happen to her after her wound heals and she has to move out of the Mission home. She knows it will be challenging to get a job with a baby. “I don’t want education, but I want to have a job to support myself and my baby”.

Zeyneba Mohammed

A women with epilepsy

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Bandi was not able to talk much as her mouth was soar. You could hardly hear her voice. When I asked her about her epilepsy, she had no idea what epilepsy was about, but she thought it was a curse. As a result, she has never received any medication, even though she has been suffering from generalized tonic clonic seizures for the past 16 years. Tragically, Bandi experienced a severe burn accident while baking injera over an open fire, resulting in injuries to her ear, face, neck, arm, and hand. The wounds have become infected, exhibiting signs of severe inflammation, foul odor, and the presence of pus. Bandi's life hangs in the balance, as she faces the risk of sepsis or the possibility of having her hand amputated.

Bandi

A women with epilepsy

Urgently support medication access.

 

Abandoned at the Mission's doorstep, a young girl's fate was uncertain. Left with a note suggesting she was possessed and unable to be cared for, her identity and origins remained a mystery. In honour of Mother Teresa, she was given the name Kidist Theresa. Kidist faces the challenges of living with autism and epilepsy, characterized by repetitive speech, limited social engagement, and repetitive physical movements like hand flapping and rocking. Tragically, Kidist has never received the medical care or access to necessary anti-seizure medications for her condition, further complicating her situation.

Kidist Theresa

A child with epilepsy

Empower children similar to Kidist.

 

Bethlehem, a charming girl with cerebral palsy, faces numerous challenges in her daily life. Due to poor balance and coordination, she is unable to sit independently. Additionally, Bethlehem copes with epilepsy and intellectual disability, further complicating her condition. Another visible difficulty she experiences is excessive drooling, a result of limited control over the muscles in her throat, mouth, and tongue. Tragically, Bethlehem does not have access to the necessary anti-seizure medication to manage her seizures effectively.

Bethlehem Theresa

A child with epilepsy

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Sara, a 5-year-old with epilepsy and autism, faces frequent seizures, often resulting in injuries from falls. Unfortunately, she was left by the Mission door with no information about her background or known relatives. The impact of an unknown background on children like Sara goes beyond the immediate challenges of managing medical conditions. It extends to the emotional and psychological well-being of these young individuals who may grapple with a sense of identity and belonging. Your support becomes a crucial lifeline, providing not only necessary medical care but also a pathway to a more secure and nurturing environment, helping children discover a sense of connection and stability in their lives.

Sara Theresa

A child with epilepsy

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In the quiet corridors of the Mission, Aster, marked by spastic quadriplegia, embodies the weight of profound intellectual disabilities and spinal deformities. Frequent seizures dictate her life, an exhausting dance that leaves her fatigued. Confined to unspoken thoughts, Aster stands among the children at the mission door, her history veiled in silence. With no family story adorning her existence, she remains a delicate flower in isolation. Despite recent medication, seizure control eludes her. Aster's story beckons for medical intervention, compassion, understanding, and an unwavering commitment to unveil the untold tales of children like her left at the door of hope.

Aster Theresa

A child with epilepsy

Empower Lives: Unveil Hope.

 

Until age 12, Yohannes lived in Bonga town, in Southern Nations, Nationalities, and People's Region. He was left by the side of a road in Bonga until foreign visitors found him and took him to the Mission house. Yohannes has seizures soon after falling asleep, before waking or around arousal during the night. When we took this picture, he had four seizures last night, which apparently is typical for him. He is not on medication for his seizures as there are no children services. Yohannes - 3rd child from left to right.

Yohannes Theresa

A child with epilepsy

 

Ashebir has been diagnosed with epilepsy for 10 years now. He is on medication but has not achieved seizure control. He has seizures at least 3 times a week. He also suffers from mental retardation.

Ashebir Mekuria

A man with epilepsy

 

In Mizan-Aman, Ethiopia, individuals battling epilepsy face stark challenges. St. Michael Church, a symbol of hope, encounters patients struggling without vital anti-seizure medication. Epilepsy, perceived as an evil spirit, subjects those affected to stigma and exclusion. Near the church, individuals, deprived of essential medication, beg for sustenance amid societal misunderstandings. Addressing this ignorance becomes a moral duty, transcending medical necessity. The narrative of Mizan-Aman illustrates the transformative force of knowledge and compassion in countering ingrained cultural beliefs, emphasizing the urgent need for awareness and inclusion in the face of epilepsy's pervasive impact.

Menit Tribe

A child with epilepsy

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Born in Meinit Shasha, part of the South West Ethiopia Peoples' Region and Bench Maji Zone, this baby faced the cruel hand of fate—a birth injury leading to epilepsy. The community, swayed by ancient beliefs, considered mercy killing, deeming epilepsy an incurable and caused by evil spirt. The 16-year-old mother, fleeing from stigma and to save her child, sought refuge on the streets of Mizan Aman town, reduced to begging for sustenance. With no medical care, the child grapples with unrelenting seizures, a silent victim of societal ignorance. This narrative is a stark chronicle of despair, etched into the unforgiving landscapes of South West Ethiopia.

A miracle baby

A child with epilepsy

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