patients story

 “This is a punishment from God,” says the 30 years old Kadina Kofto while referring to her epilepsy case. She wants to have friends of her age, but she feels her epilepsy is a deterrent for relationships. Though she wants to get married and start a family, she is convinced that no man will marry her. As a result of such self-deprecating views, she often suffers from depression and self-hate. One day, Kadina lost consciousness while baking injera in an open fire. She fell into the fire, which burned 7.5% of her leg, forearm and hands. This is one of the many generalized seizures that left her with scar contractures and, sometimes, infections. Kadina used to have seizures at least twice a day. But now, she has it less often than before, thanks to the combination medication of Phenobarbital and Phenytoin. Though she has to travel 21 km from her village, Seka, for a medication refill, she is still hopeful. She wants to work and support herself and spend time with other people like her to share her experience. 

Kadina Kofto: Women with epilepsy in Bonga (Southern Ethopia)

 Aisha's story is a heartbreaking example of the devastating impact of epilepsy in rural Ethiopia. Her life took a tragic turn when she suffered a severe burn accident while unconscious during a seizure. Believing she was possessed by an evil spirit, Aisha had never sought treatment for her epilepsy before the incident. The burn left her with extensive injuries, requiring debridement and skin graft surgery. To add to her immense grief, Aisha also lost her daughter to a seizure-related burn. After visiting a nearby hospital, Aisha unknowingly took a sleeping tablet, leaving her daughter to cook dinner. Tragically, her daughter experienced a seizure while cooking, resulting in a fatal accident that Aisha discovered upon waking up. The haunting realization that her daughter's death could have been prevented weighs heavily on Aisha. She questions the factors that contributed to the tragedy, whether it be her own actions, the lack of medication availability at the clinic, or systemic failures that failed to protect her innocent child. Aisha carries profound guilt and a desire to join her daughter, highlighting the need for better epilepsy care and support in the community. 

Aisha: Women living with epilepsy

 Edamin's story reflects the challenges faced by a 14-year-old boy with epilepsy, compounded by a difficult family situation. Despite his father's determination and belief in the power of education, Edamin has been stuck in the 2nd grade for four years. His teacher's refusal to let him progress due to his epilepsy has hindered his academic advancement. Despite the father's efforts to seek alternative options, including private schools, Edamin has faced rejection and exclusion. Adding to Edamin's struggles, he endures bullying at school, enduring physical and verbal abuse from his peers. The hurtful names and taunts, labeling him as "evil spirited," have taken a toll on Edamin's emotional wellbeing. The constant bullying has become unbearable, leading Edamin to refuse attending school altogether, causing deep sadness for his devoted father. This poignant situation highlights the urgent need for inclusive education and support for children with epilepsy. The story sheds light on the harmful consequences of stigma and the necessity for schools and communities to create a safe and accepting environment for all children, regardless of their health conditions. 

Edamin: A boy living with epilepsy

 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

 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

 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 honor 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

 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

 Sara has epilepsy and autism and is not on medication. She was left at the Mission door at the age of 5. “At least 5 times a day”, the nurse said when talking about the frequency of her seizure. She experienced many injuries when she fell down due to the seizure. 

Sara Theresa: A child with epilepsy

 Aster has spastic quadriplegia, the most severe form of cerebral palsy with severe intellectual disability and deformities of her spine. She has severe stiffness in their limbs but a floppy neck. Aster is not able to walk or speak. Her seizures are frequent, and she gets exhausted afterwards. Aster is among the children left at the mission door with no family story to tell. She has not received any treatment for her medication. 

Aster Theresa: A child with epilepsy

 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: 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

 These patients have epilepsy and are not on an anti-seizure drug. They were found begging for food in Mizan-Aman town by St. Michael church. Mizan-Aman is located in the Southern part of Ethiopia in SNNPR State, Bench-Maji Zone, at 561 Km from Addis Ababa. The community believe epilepsy to be an evil spirit and contagious, which is trying to enter the concerned family. Stigma and exclusion are common features of epilepsy in this community and a major contributor to the burden associated with the condition. Stigma here is based on two myths: that epilepsy is contagious and caused by demonic possession. Belief about possession traverse societal boundaries. In most cases, it is not related to the level of education or literacy. Sometimes, the most educated people will tell you that it's demonic. They say it's in the Bible. 

Menit Tribe: A child with epilepsy

 This miracle baby was born with a seizure in Meinit Shasha, one of the woredas in the South West Ethiopia Peoples' Region of Ethiopia. Part of the Bench Maji Zone (southern Ethiopia). The grandparents and the community wanted to do mercy killing to relieve him from his suffering from an incurable and evil spirited disease. His mother, aged 16 ran away from home and lives on the street of Mezan Aman town as a begging. The child continues to have seizures as she has not been seen by a doctor and started taking anti-seizure drugs. 

A miracle baby: A child with epilepsy