In a world where sleep is often taken for granted, it is not strange for Juliet Rogito to fall asleep while walking. She may be walking on the street one minute and the next suddenly collapse and slip into a deep slumber.
When it started happening back when she was a primary school pupil, teachers thought her lazy and undisciplined. At that time, Juliet was 13 years old and her teachers also thought that perhaps the sleep menace was a sign she was being overworked by her mother.
“I remember one time I was told to go to the field and run, and go to the tap and wash my face. There were so many scenarios when I remember teachers used to think that I’m probably not getting enough sleep at night, that probably my mom kept me up doing some chores. It was traumatic,” she says.
The social work and community development student says incidents such as falling asleep while walking, coupled with many other scary ones, bothered her mother, who took her to a nearby chemist for consultation.
“We didn’t come to take it seriously until I started to experience other symptoms and my mom took me to a pediatrician. After many tests, I was clinically diagnosed with narcolepsy,” she says.
Narcolepsy, also known as sudden sleep disorder, is a rare life-long disorder of the central nervous system characterized by the brain’s inability to control sleep-wake cycles. People suffering from narcolepsy have sudden sleeps that are managed with medication.
Juliet says because of a lack of awareness, narcoleptics often deal with stigma as some communities mistake the condition for someone who has been bewitched. Juliet says the stigma is like carrying an invisible weight on her shoulders.
“High school was challenging. Some teachers, even when I had explained it to them, were unwilling to accept that I was sick,” she says, adding that one of her worst moments was a time when she found herself dozing off while balancing on a wall.
Raphael Ndungu, an electrical engineer in Utawala estate in Nairobi, is also living with a sleep disorder. His condition made him quit his job.
“I cannot even drive. I was employed, but I decided to opt for self-employment because no employer will be patient enough to watch you constantly sleep at work. I decided to do work that is very involving to avoid falling asleep suddenly. Now I do electrical work.”
When asked if people fear calling him for such a task due to his condition, Raphael says he has to convince them that he will do a perfect job.
“I can’t come and tell you I will work for you and sleep. Perhaps I will tell them that I am not feeling well then I will rest for one or two hours, then come and continue with work because I cannot manage to work the whole day continuously.”
Modify lifestyle
The 36-year-old who has lived with the condition for more than two decades says he has had to modify his lifestyle, including avoiding eating hot meals.
“I have had to put boundaries, especially on what activities to avoid causing danger on my side. I remember there is a time I caused a road accident when my car swerved off the road and hit a tree. That happened because I had not taken the drugs I’d normally take before driving. Since then, I have kept off from driving even motorcycles. I need to be driven in case I am travelling with my car.”
James Ngare, a seasoned trader at Nyamakima who deals with mobile phone accessories, says misdiagnosis took a toll on his career and made him spend months trying to cope with a problem he didn’t fully understand.
“By the time I was in campus, I had gone to many hospitals and none of the doctors mentioned narcolepsy. I came to know about narcolepsy in a newspaper when Ann Nduati, the founder of Narcolepsy Africa Foundation, raised the issue because her daughter was suffering from the condition,” he says.
His misdiagnosis taught him the importance of questioning, and seeking second opinions, especially when it came to something as crucial as health. Just like Juliet, James’ doctors prescribed a drug called Retallin that promotes wakefulness and reduces excessive daytime sleepiness, but he found it was not only very expensive but also not readily available in the local market.
“After taking them (drugs) they had side effects like headache, so even by the time I did away with them I didn’t even tell my parents. The only cure that is there for narcolepsy is accepting yourself and making people around you know what you’re going through.”
Narcolepsy is a rare life-long disorder of the central nervous system characterized by the brain’s inability to control sleep-wake cycles.
Photo credit: Shutterstock
Narcolepsy onset
While narcolepsy can affect people of any age, symptoms always start in childhood to early adulthood, roughly from ages 7 to 25.
Maryanne Nyambura, an advocate for narcolepsy at the Narcolepsy Africa Foundation, says her journey hasn’t been easy, but it has made her help others understand and navigate the complexities of this condition.
“I didn’t know it was a condition until the doctor diagnosed it. So whenever I go to a new place, during introduction, I always have that disclaimer: ‘If you see me dozing off or probably falling asleep, it’s not because you’re boring or I’m disinterested in what you are doing, but it’s because I have this condition. My brain does not function the way a typical normal brain should. So yeah, my brain is unable to regulate the sleep and wake patterns.’”
By just describing the condition, she says, it minimises the chances of people misjudging her.
“That’s how I found myself doing the advocacy things,” she says of the journey that traces back to her high school days when she got her diagnosis.
Maryanne says she runs awareness campaigns through the use of informational materials, online resources, and social media platforms to dispel misconceptions about narcolepsy.
“Parents DM and ask me to speak to their children, to just give them that word of hope because they see I’ve ‘made it.’ But it’s a daily struggle.”
Employee assistance
The 27-year-old software designer urges employers to consider implementing employee assistance programs for narcoleptic employees that cater to mental and physical health, thus boosting productivity and overall well-being.
Anthony Muli, the CEO of Entice Africa Safaris and Maryanne’s employer, says creating a workplace that accommodates and supports employees with narcolepsy not only enhances their quality of life but also strengthens the bonds of their team.
“We only have this one employee with this condition and my team understands her condition. They always check up on her during the day and in the morning, in the evening, wherever they move together, to make sure she’s safe,” he says.
Prevalence
Data from the Centre for Narcolepsy at Stanford University estimates that narcolepsy affects approximately one in every 2,000 individuals and about 3 million people worldwide. However, medication and lifestyle changes can help manage the symptoms.
Simeon Ochanda, a neurologist at Kenyatta National Hospital, says the diagnosis of narcolepsy is determined from history and by the use of a special machine since some people display abnormal movements such as restless leg syndrome, epilepsies, and seizures during sleep.
“The history of the problem is the way you make the diagnosis. After listening to the patient’s history and noting it down, we have some objective ways of measuring sleep. We call it somnography. You are put in a room and you are connected to electrodes which are fed into this machine that shows the pattern of sleep.”
Other triggers
Dr Ochanda says genetic factors such as hypocretin, also known as orexin, age, and other triggering infections or inflammation play important roles in the development of narcolepsy. It’s essential for individuals experiencing symptoms of narcolepsy to consult with a neurologist since a specific treatment plan will depend on the type and severity of narcolepsy symptoms.
“That diagnosis needs to be made because some causes are treatable. People with hypothyroidism are always tired and sleepy. You diagnose hypothyroidism, it is treatable, and the patient will become okay.”
Dr Ochanda says that even though there are drugs that ensure wakefulness, patients need to have a regular sleeping pattern and good sleeping hygiene.
“Setting a regular sleeping time helps sleep be adequate so that you have enough and you are not disturbed in the daytime. We call it sleep hygiene,” he explains.
Policy steps
Catherine Karegezi, the executive director of the Non-Communicable Diseases Alliance, calls on the government to put more focus on rare diseases such as narcolepsy and find amicable solutions to address them.
“We recently had a forum with SHIF, formerly NHIF, just to explain to us about their social health insurance because that is going to be critical for people living with narcolepsy and other non-communicable diseases, for us to understand what is going to be available in terms of management and treatment of these conditions.”
There is no data on the condition available in Kenya, indicating the need to invest in more resources and training of caregivers.
