Narcolepsy Sleep Disorder

Living with Narcolepsy in Kenya (Rare Disease Write Up)

My name is Maryanne Njuguna and I have been living with Narcolepsy type 1 ever since I was 14 years old. I was diagnosed with the condition when I was 19 years this was after years of misdiagnosis and receiving the wrong treatment.

Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. A related condition, idiopathic hypersomnia, is a chronic neurological disorder marked by an insatiable need to sleep that is not eased by a full night’s slumber.

Narcolepsy and idiopathic hypersomnia affect over 3 million people worldwide, yet the majority of people living with these conditions are currently undiagnosed, misdiagnosed, or receiving the wrong treatment.

A normal person would have to stay awake 48–72 hours to feel the same level of sleepiness. Narcolepsy is also unfamiliar to many doctors thus the prolonged diagnosis period.

In Kenya and across Africa Narcolepsy and other sleep disorders still remains unfamiliar to many and misunderstood by those who have heard about it. Some communities associate Excessive Day Time sleep with witchcraft thus many individuals do not seek medical assistance.

I used to experience sudden, uncontrollable sleep attacks at any given moment, doing just about anything, and I mean, anything. For instance, cooking, eating, writing notes in class, standing up, in the middle of a conversation, at the salon when my hair is being done, while queuing at the bank or bus stop, while bathing or even walking, etc. of which I still do up to today.

It was not easy in high school because I used to fall asleep during lessons and exams. I was always behind the syllabus because if during preps or any time I held a book I fell asleep. The ripple effect was poor performance. There was a time I felt that I was bewitched because doctors said I was healthy and could not explain my sleepy nature. Teachers thought I was lazy and rude because of the tendency of falling asleep in class and lack of taking notes got me to do a lot of punishments, which I also fell asleep while doing them. I used to take a lot of toilet breaks, which I used for taking naps. The toilets offered a safe space for me to avoid getting caught and being punished.

With the challenge I experienced in high school, you can imagine what a person living with Narcolepsy goes through during employment and or a relationship.

Narcolepsy has no cure. Though expensive and scarce treatments are available today and can improve symptoms of narcolepsy. Symptom management varies widely person by person and it often takes a long time to find an optimal combination of treatments.

Narcolepsy is a daily/hourly journey, for we experience the symptoms throughout the day and whenever we are emotional and apart from being out of treatment the other major challenge, we all experience is stigma. Raising awareness on the existence of sleep disorders in Africa is very important, Sleep Disorders are not a ‘mzungu’ condition and we are not cursed as some would say. It will also assist in minimizing stigma and also reach out to those who have the symptoms and have been unable to be diagnosed by the doctors.

Narcolepsy being so rare only a handful of people know about it and are able to distinguish the symptoms. That is why awareness is very important and I’m happy that Rare Disease Day acknowledges Narcolepsy and helps to create awareness.

Take time to learn more about Narcolepsy narcolepsyafricafoundation.org | narcolepsynetwork.org | www.wakeupnarcolepsy.org | www.learnaboutnarcolepsy.org | healthysleep.med.harvard.edu

Maryanne Njuguna | managinarcolepsy@gmail.com | FB, IG, Twitter @themaryanjuguna #usingiziinitiative