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Embu County, Kenya: The scars are visible

MSF runs 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 nine health facilities, involves MSF staff mentoring Ministry of Health (MoH) medical staff in the care and management of NCDs. 

The scars are visible
Since August 2017, MSF has enrolled and put on treatment close to 3,900 patients with NCDs in the facilities it supports. Out of these, 273 live with epilepsy.

A grim life, not knowing when a seizure would set in and throw him to the ground made 62-year-old Joseph live in constant anxiety, despite living with epilepsy for more than 30 years. A condition that he feels changed his life in many ways, not for the better.

Having sought several remedies, at a time when there were many misconceptions about epilepsy, Joseph has come to embrace his condition, as the fits have immensely reduced as he takes his medications as required.

His anxieties have further reduced, since he now has to only make a short trip to a clinic near his home in Kairuri, Embu to access the medications that he needs. “This facility (Kairuri) is very close to me, and has reduced the distance I had to travel before to Embu, which you know would put me at a bigger risk and my wife would never settle whenever I was going there. She imagines that I can get a seizure while walking and get hit by a car,” says Joseph.

Epileptic seizures hit Joseph at the prime of his youth. He was a matatu driver at the time, ferrying passengers between Embu and other towns to Nairobi. He had saved up enough money and was hoping to buy his own matatu, to earn him extra income to feed his wife and three children. But that was not to be. “I ended up using up all the money I had saved on treatment, I could no longer drive as the condition would not allow me to, and I am not allowed to climb trees or sit around fires. I had to go back to my farm, where I get my daily bread,” he says.

Joseph has been receiving his epilepsy treatment and other services at Kairuri Health Centre since early 2018. Before, he had to go to Embu General Hospital, which by then was the only facility offering such treatment, mostly at a cost. Many patients with epilepsy have had to go through similar ordeals in their lives.

In mid-2017, Médecins Sans Frontières (MSF) started a program in Embu County to integrate care for epilepsy and other non-communicable diseases (NCDs), including asthma, diabetes and hypertension within existing primary health facilities in the county.

The program takes a mentorship approach in which MSF staff coach Ministry of Health (MoH) clinical staff in the primary health facilities on the management of NCDs, with the aim of equipping them with skills to manage such patients on their own upon completion of the mentorship modules.

Since August 2017, MSF has enrolled and put on treatment close to 3,900 patients with NCDs in the facilities it supports. Out of these, 273 live with epilepsy. All patients are now seen in the lower facilities such as health centres and dispensaries, and only serious cases are referred to the County Referral Hospital.

“Several misconceptions and heavy stigma also inhibit the efforts to care for patients living with epilepsy, being a disease that many do not its causes or the availability of treatment,” says Dr. Elisha Sithole, the Project Coordinator and Medical Referent for MSF’s project in Embu.

When nine-year-old Makena had her first seizure at two, her mother never imagined the journey that lay ahead of them. “I was milking my cow when I heard her make some unusual sounds. I rushed and found her convulsing on the floor. I was shocked, I didn’t know what to do,” says her mother. “We were preparing for the Easter weekend, and that’s how we stopped everything.”

The mother rushed her to Embu Referral Hospital, where she was admitted for a week. She had a few more seizures before they sought a local remedy from a herbalist. “We would pay Ksh 30,000 (USD 300) every month for the medication. There’s nothing else we could do because we wanted her to get well,” says Makena’s mother.

However, six months down the line, the cost of medication was taking a toll on them, but Makena was still getting attacks. “They said she’d get well after one year, but after all these months we were not seeing any development, and she’d still get lots of seizures. We even went and performed rituals at my home and my wife’s home, thinking it could be a curse,” says the father.

By this time, she had sustained many injuries on her face and head from the frequent fits she had, and she would hurt herself whenever she fell down. The scars are visible. They were concerned that Makena may have sustained internal head injuries, and took her to the country’s apex referral hospital, the Kenyatta, for head scans. Luckily, they all showed no internal injuries.

They took her back to the Embu Referral Hospital, where a doctor prescribed more drugs for her. They had to buy the drugs each time, at a cost of about Ksh 6,000 (USD 60) each month as they were not available at the hospital’s pharmacy. “She showed some improvement. The doctor said that when she gets to 10, she may likely be cured. She is nine now,” said her mother, letting on a sly smile as if to hope. “We’ve never failed to get her the drugs, even once. I could give anything just to have her drugs because without them she’d get attacks.”

Makena’s mother is a plumber, working in a nearby water company while the father is a fulltime farmer, growing maize for subsistence and tea, which they sell to a nearby tea processing factory. They say that despite their meager earnings, they have had to struggle with hefty costs in an effort to see their young girl get better.

“At Kairuri here, I get drugs every single time for free, and we never lack except for the last two weeks when the facility ran out. The staff are quite friendly, and they even trained me how to carry her when she’s having a seizure,” says the mother. “I usually have to fill in leave forms every time I take her to the clinic because it’s still quite far.”

For 33-year-old David, life has never been the same since he had his first seizure. He was fired from his receptionist job, and it did not take long before his wife left him, leaving with their one-year-old boy.

“No one wants to employ me with my condition because they fear that I may hurt myself or others at work, and impose liabilities on them, yet I no longer get attacks,” he says.

David recounts how he once fell in fire, after his brother had finished cooking, sustaining burns on the side of his chest and stomach and the back of his arm. He was treated at Embu Referral Hospital and discharged, but even though he doesn’t recall the feeling while he was getting burnt, the pain he felt at the hospital later and the heavy scars that remained, remind him of the day. “I just recall blacking out, the next thing I was in the hospital, in much pain,” he says.

Fire or strong heat can be a trigger for some patients, and it differs from patient to patient, as some are triggered by loud music or flashing lights.

Joseph has six children, all married except the youngest one, who is still going to school. David still lives with his mother, but is hopeful that things will change in his life. He currently works as a casual labourer in a neighboring farm. Patience goes to school and hopes to be a doctor when she grows up.

They all get their medications at Kairuri Health Centre, and hope that if the supply is sustained, they will lead healthy and productive lives.

*Names changed to protect the identity of the subjects.

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