Edna Namara, GPJ Uganda
Marlis, who wants only her first name used due to the stigma surrounding epilepsy, moved in with her uncle after she lost her job due to her condition.
KAMPALA, UGANDA — For Marlis, 2021 was the year of hope — the year she thought her life would change. The 31-year-old became an orphan at 11, when the last of her parents died in 2002. Five years later, she discovered that she had epilepsy, a neurological disorder caused by unusual nerve cell activity in the brain.
Marlis, who doesn’t want to use her last name because of the stigma associated with the disease, dropped out of school when she overheard a teacher say that her frequent epileptic seizures scared her fellow students. “Children started saying I was possessed by my dead parents’ spirits,” she says. “I found myself believing their words, so I dropped out.”
Marlis experienced chronic seizures for years. In February 2021, she got on daily antiseizure medication that was free at government hospitals. Her episodes stopped. She met a man and fell in love, reviving her dream of one day getting married and having children. But in January, that dream began to crumble when she went off her medication for two months due to a countrywide shortage. A private pharmacy she visited to see if she could pay for the drugs charged 30,000 Ugandan shillings ($8.20) a month, which she couldn’t afford.
Ugandans with noncommunicable diseases like epilepsy are struggling to recover from setbacks they suffered when the government cut funding for their medications to focus on fighting the coronavirus pandemic.
“The attention switched to COVID, and the rest were neglected because they were seen as not urgent,” says Geoffrey Macho, the parliamentary chair for mental health diseases, who is now sponsoring a bill to increase funding for noncommunicable diseases.
Epilepsy affects about 50 million people worldwide, according to the World Health Organization. A quarter of cases are preventable, and antiseizure drugs can make 70% of those living with the disease seizure free. But the agency says nearly 80% of people with epilepsy live in countries where it’s often difficult to access adequate health care resources, forcing many to go untreated.
Dozens of people come to Mengo Hospital, a private nonprofit medical center in Kampala, for free diagnosis and treatment on World Sight Day, dedicated to bringing attention to vision impairment. So many patients show up that most have to wait under a white tent outside because the waiting room is too small. They listen attentively as Lydia Kinobe, a nurse at the hospital, educates them about disease prevention and management.
“The key is to learn what you are sick of and change your lifestyle,” she says. “Reduce your sugar and salt intake and avoid junk foods.”
Kallisa Peace Mwesigwa, who is epileptic and diabetic, says she made the long journey by bus the day before from Lyantonde, a town about 200 kilometers (125 miles) west of Kampala, the capital. She was desperate during the coronavirus lockdown when she didn’t receive treatment. “My condition really deteriorated,” Mwesigwa says. “At times it feels like there is a flame of fire under my skin.”
Nicholas Kamara, a lawmaker who chairs the parliamentary committee for noncommunicable diseases, says while screening people for diseases is important, it’s pointless if patients aren’t given treatment after diagnosis.
“If, for example, one is tested for HIV but is denied access to [antiretroviral drugs], of what benefit is the testing?” he says. “Deaths from cancer, cardiac arrest, high blood pressure, diabetes and kidney disease are all too common.”
In October, Kamara and other Ugandan lawmakers introduced a bill that would increase funding for drugs for noncommunicable diseases. He says Uganda spends 9% of its annual budget on health services, far below the 15% recommendation made in 2001 when African Union member countries met at a summit in Abuja, Nigeria.
Dr. Richard Idro, a pediatric neurologist and senior lecturer at Makerere University in Kampala, says even a brief interruption of access to prescribed medication can cause a major setback for a patient. For example, epileptic seizures can disappear permanently if a patient is placed on daily drugs for two years without skipping a dose, he says.
Nina Mago, the founder of Purple Bench Initiative, an organization that advocates for Ugandans living with epilepsy, says she knows firsthand what it’s like to skip regular medication. “I missed my antiseizure drugs for two days and got an attack,” she says. “Can you imagine missing medication for two months?”
In addition to lack of health care, Mago says people with epilepsy often face stigma in their communities. She recalls once emerging from a seizure to find herself in an empty classroom, surrounded by bottle tops, stones, plastic bottles and all types of litter. Her teacher and peers had thrown the objects at her to confirm she wasn’t dead.
“Our world is enshrined in circles of stigma,” she says.
Oyoo Akiya Charles, the commissioner for noncommunicable diseases at the Ministry of Health, says the scarcity of medication also leaves patients susceptible to exploitation by people who claim to cure diseases using unproven methods. Oyoo, who like many Ugandans uses his family name first, says in addition to increasing funding, Parliament should regulate the work of people who claim to be healers.
“Rural people especially get taken advantage of because they have no access to drugs that work,” he says.
Healers defend their craft. David, a self-proclaimed herbalist who requests to use only his first name for fear of retribution, says he cures epilepsy. He charges an advance payment of 100,000 shillings ($27), and patients spend four days at a clinic he operates out of his home in Apac, a rural district in northern Uganda. But he has a disclaimer. “It’s God who cures,” he says. “I’m just an agent.”
Mago, the Purple Bench Initiative founder, advocates for more training on types of epilepsy, especially for teachers and child care providers. Some people have absence epilepsy, which causes seizures that make them “stare into space” for up to 20 seconds, according to the National Institute of Neurological Disorders and Stroke, a United States government agency. “A teacher who doesn’t understand that may say something like, ‘Why are you just staring like a fool?’” Mago says. “A comment like that could make a child grow into a broken adult.”
For Marlis, dealing with that kind of adversity has been just as difficult as the shortage of drugs. When she went off her medication, she was working at a supermarket. Her seizures returned quicker than she expected. Six of her episodes happened at work. Her employer complained that she was “creating scenes” and making customers uncomfortable. He placed her on indefinite unpaid leave.
“He told me to return only after I have learned to listen to my body and know when I’m about to have a seizure,” she says.
For the 11 months she was on antiseizure medication, Marlis kept her epilepsy a secret from the man she loves and is hoping to marry. She had hoped that if she stayed on medication for two years her seizures would disappear forever, so the topic would never come up with him. “He is so good to me, and I do not want to lose him,” she says.
When Marlis began having seizures again due to lack of drugs, she made excuses not to visit him. She thought she could get away with that because he lives in Mbarara, a city in western Uganda, about four hours by road from Kampala. “I believe he will dump me if he finds out that I have epilepsy,” she says.
In March, she got back on her medication after she learned that public hospitals had a limited supply of drugs available. Because she didn’t have any medication for more than two months, she starts counting all over again, hoping she can go two years without missing a dose. But she worries that another shortage could occur and forever derail her dream of having a family.
“I will have lost a moment in my life that I may never regain,” she says.
Edna Namara is a Global Press Journal reporter based in Kampala, Uganda.
