People Think I am Bewitched

The Bane of Battling a Chronic Disease and Stigma in Kenya's Embu County

By MSF

February 12^th, 2021

Struggling with a chronic disease and concurrently facing societal shame and isolation can increase mental and physical strain on any human being, but often the promise of medical interventions that can subdue such conditions gives a new lease of normalcy in their lives – a fact that patients living with epilepsy in Embu County, Kenya know too well.

Humans by nature fear things they do not understand, it’s something we’ve seen with many diseases in the past, and epilepsy has remained to be one of the mysterious diseases to those who do not understand it. It is one of the most derided conditions among local communities, who have formed myths surrounding it, including a belief that having seizures is a sign of supernatural possession.

Falling and Rising

When we meet 41-year-old Peter Gitonga, he is standing next to his small makeshift kiosk situated towards the outer end of Kanja town in Embu County. One can easily tell that he is smiling from the sudden emergence of fine lines around his eyes, though the smile is hidden behind his blue face mask. He sells small wares and some dry food stuffs here.

Peter is a patient living with epilepsy, a condition which only came to the fore when he was nine years old manifesting as a seizure while in class just before sitting for his exams.

Peter’s kiosk has been his lifeline; besides the income he gets from selling other produce from his farm since he has never been able to secure a job due to his condition. “When I take my medicines well, I do not get any seizures and can work well, but people out here speak ill of me saying that I am disabled and can’t do any work: they tell any potential employer that I have a condition that makes me ‘fall’ every time and will be a liability to them,” Peter says. “I’ve lost many jobs like that.”

Peter’s wife of two years left him three years ago, saying she was tired of his seizures and could not take it anymore. “She found me in the bathroom one time after I had had a seizure while taking a bath, and she said she had had enough, that living with a person who dies and resurrects every time was an embarrassment to her,” says Peter.

Patients with epilepsy are ostracized by the society, and many people avoid them. This has thrown many into depression, adding onto the burden of managing the disease.

“When patients with epilepsy come to the hospital, we laud and support them because it means they have managed to overcome the slurs, fear and humiliation thrown at them by members of the society,”

I've never gone a day without taking my medication - Jane Mwendia

Supernatural beliefs

While some patients believe that epilepsy is a medical condition, others still strongly believe that it’s brought by supernatural influence. Thirty-year-old Jane Mwendia holds that her condition is caused by external forces, that she can “see the spirits coming,” just before she gets a seizure.

She has lived with the condition for 13 years and despite her belief, she takes her medicines faithfully as she believes that they have helped her keep the seizures at bay. “I have never gone a day without taking my medications. I ran out of drugs during the recent healthcare workers strike and couldn’t access treatment at the local health facility so I had to send for them to be bought at the next town in Kiritiri,” she says.

Keeping seizures at bay

Adequate therapy has proven to keep epileptic seizures in check, making patients live normal lives without fear or worry of getting incessant attacks. Psychosocial support remains an integral part of therapy for patients living with chronic illnesses, as it holds the key to sustained adherence to treatment and better outcomes for the patients.

Since MSF brought these drugs closer to us here, I haven’t had seizures, it’s only that when you take these drugs, they weigh you down that you can’t work. I spoke to my doctor and he adjusted my dose, now I can do my work quite well during the day,

In Embu, patients living with chronic conditions including epilepsy have formed patient support groups, which they rely on to create bonds with other patients with similar conditions where they encourage each other in their treatment journeys.

Peter Gitonga heads his support group for patients with epilepsy in Kanja town. Their group has 25 members and they have gone beyond just encouragement to starting a table banking system to financially support one another.

Mental well-being

Mental health support is vital in the treatment journey of patients with chronic illnesses, to help them cope with the burden of managing the illnesses and other related socio-economic afflictions. Medical experts warn that some of the severe mental health conditions such as psychosis and schizophrenia could also come as a result of poor management of such diseases as epilepsy, when patients are not provided with proper treatment and psychosocial support.

Since June 2017, MSF has been running a program in Embu County that focuses on testing models of care for non-communicable diseases (NCDs) within existing primary health facilities. The project – run in 11 health facilities – involves MSF staff mentoring Ministry of Health (MoH) medical staff in the care and management of NCDs. Results are shared with other organisations working on NCDs to try to increase access to care for these conditions elsewhere. MSF currently focuses on hypertension, diabetes, asthma, chronic obstructive pulmonary disease (COPD) and epilepsy.

The core model of this pilot program was informed by the gaps identified in the management of NCDs in the primary healthcare facilities – from community health levels to level three in the public healthcare system – which lacked some capacity to manage patients with these conditions. Most of these patients had to be referred to higher facilities, which were often far from their homes, which meant that they had to spend a lot of time and money to reach the facilities, yet with these medical conditions they need more frequent visits to the facilities than others.

The model has shown that equipping primary health facilities, consequently bringing health services closer to patients’ home, and equipping staff with skills and supplies means more are able to easily access healthcare services, hence reducing the distance and costs linked to travel to Level 5 hospital (County Referral Hospital). This also eases the congestion at the apex hospital allowing medical teams to focus on more severe cases.

Continuity of care

“We initiated a pull effect, because with access to tests, more patients were identified during routine medical check-ups and others came as a result of such care being closer to them. This means the net caught many who would have fallen through the cracks or even failed to access treatment due to the costs involved in seeking treatment elsewhere,” says Stephen Kimwaki, a Clinician working with MSF in Embu.

However, this good news may not be so good. While this pull effect is seen to be positive in access to care, its impact is likely to weigh down the public health system without fortified investment in the primary healthcare facilities when MSF exits. The county needs to invest more in supply of drugs and other commodities if patients have to be retained and proper adherence maintained.

In recognition of the frequent stock outs of NCDs drugs at the government health facilities, MSF is supporting patients living with NCDs to explore the means of initiating a Community Revolving Fund Pharmacy (CRFP) with the aim of ensuring consistent access to quality drugs at more affordable prices than commercial pharmacies.

Since August 2017, MSF has enrolled 6,150 patients with NCDs in the facilities it currently supports. Out of these, 366 live with epilepsy. All patients are now seen in the local facilities and only serious cases are referred to the County Referral Hospital. MSF is currently in the process of handing over all services to the county.