La narcolepsie est un trouble neurologique chronique du sommeil qui se caractérise par l’incapacité du cerveau à réguler les cycles veille-sommeil. On pense qu’elle est causée par un problème du système immunitaire, un manque ou une déficience d’hypocrétine, un neurotransmetteur également connu sous le nom d’orexine, chargé de réguler l’état de veille. Les symptômes de la narcolepsie comprennent une somnolence diurne excessive et une faiblesse musculaire accompagnée de rires et d’hallucinations autour du sommeil, ainsi qu’une paralysie du sommeil. En 2009, à l’âge de 19 ans, j’ai découvert que les habitudes de sommeil inhabituelles avec lesquelles je luttais depuis près de 5 ans étaient en fait une narcolepsie, une maladie rare que les médecins connaissaient mal. C’est ce qui explique les erreurs de diagnostic et les traitements erronés que j’ai subis.

J’avais été exposée à des antihistaminiques et à des antibiotiques dès mon plus jeune âge afin de traiter une conjonctivite allergique et des infections pulmonaires, ce qui, selon le médecin, a peut-être contribué à déclencher ma narcolepsie. Mais il n’y avait aucun moyen de le prouver car des études ont associé un éventail de facteurs de risque à la narcolepsie, dont le patrimoine génétique, les changements hormonaux, le stress psychologique important, les changements soudains des habitudes de sommeil, le vaccin Pandemrix, des infections comme la grippe A ou les infections à streptocoque, voire d’autres MNT.

On sait peu de choses sur la prévention de la narcolepsie, mais les mesures de prévention telles que le dépistage précoce, les tests génétiques et la sensibilisation peuvent réduire le risque de développer des comorbidités et améliorer la gestion de la maladie. De nombreuses personnes atteintes de narcolepsie prennent du poids en raison de l’inactivité et de la somnolence. La narcolepsie est également liée à l’hypertension artérielle, à l’hypercholestérolémie et aux maladies cardiovasculaires. Pour contrer ces menaces, je fais régulièrement de l’exercice et j’évite les aliments transformés et les boissons sucrées. J’ai un régime pauvre en glucides, j’ajoute des herbes aromatiques fraîches et des épices à mes repas et je bois beaucoup d’eau pendant la journée. J’évite le café, contrairement à ce que les gens qui connaissent mal la narcolepsie me conseillent de boire. Parce que le café a tendance à intensifier mes crises de sommeil.

J’ai cessé de suivre un traitement en raison du coût élevé des médicaments contre la narcolepsie. Actuellement, je m’en sors en faisant des siestes régulièrement dans la journée et en sensibilisant ma communauté aux ajustements nécessaires pour pouvoir mieux fonctionner.

Ces derniers temps, j’ai constaté une augmentation de la publicité pour les aliments mauvais pour la santé. Cela me fend le cœur que ces publicités aient réussi à se frayer un chemin dans les chaînes de télévision pour enfants. Ces marques ne manquent pas d’air, car elles parrainent des activités pour enfants et leur offrent des sacs de cadeaux, malgré les impacts à long terme de leurs produits.

Je crois fermement que la responsabilité de la prévention des MNT n’est pas individuelle mais collective, qu’elle appartient à chacun.e d’entre nous, depuis les décideurs jusqu’à l’épicerie du coin, en passant par les chefs religieux et les professionnels de santé.

My challenges with sleep started when I was 14 and only got correctly diagnosed at the age of 19. This was after I had given up on getting answers about why I was falling asleep involuntarily most of the time. It was only because I spoke out from the fear of being punished at school during a motivational talk. The motivational speaker, who also happened to be a psychiatrist, was able to direct me to help after my brief explanation of why I was dozing off during the session.

After I was unable to continue with my treatment, I started researching narcolepsy and posting my findings on my social media pages as a way of educating my friends about why I was always sleepy. Little did I know I would be able to connect with other people living with narcolepsy across our country and that was how Narcolepsy Africa Foundation (NAF) was born. We have been able to raise narcolepsy awareness across the country and mainly advocate for students who are stigmatized at school, in families and community.

Ivy Ruguru is a first-year University student clinically diagnosed with narcolepsy at the age of 15, this was after two years of living with the symptoms. Her mum had learned about narcolepsy in one of our narcolepsy awareness forums. When Ivy’s diagnosis was confirmed to be narcolepsy, we were able to educate her teachers to create a supportive environment in her school. NAF also reached out to Kenya National Examinations Council, so that Ivy and others like her could be registered as students living with special needs in order to be compensated with time during their examinations when a sleep attack appears. Timely diagnosis, therefore, can help provide equal opportunities to those living with Narcolepsy or any other NCD.

We have a lot of unknowns when it comes to the prevention of narcolepsy and other rare conditions. As a person living with narcolepsy type 1 which is a rare disease, I would like to urge decision makers to prioritize research and treatment centers, for both sleep and other rare conditions, affordability, and availability of treatment including insurance. There is a need to make reasonable adjustments in the workplace and school to enhance productivity and the ability to describe how narcolepsy affects our working and learning experience so that we can ask for support with confidence and without fear of discrimination and dismissal.

Living with narcolepsy is a minute-by-minute journey because it is not guaranteed you’ll be fully awake the next minute, especially without medication. Late diagnosis and wrong treatment which can lead to severe irreversible, debilitating, or life-threatening consequences also gravely affect us directly. Narcolepsy is linked to serious co-morbidities, both physical and mental.

We have to face financial hardships on account of being excluded from most private medical insurance packages or must pay very high premiums with low limits because we have a pre-existing NCD.

It is so heart-wrenching when a doctor dismisses our symptoms and turns us away because they think we are overreacting or faking our symptoms. Just like other rare diseases, narcolepsy is a broad-spectrum disorder that has no cure. The main treatment is pharmacological; whereas no single treatment is fully effective in eliminating excessive daytime sleepiness and cataplexy. Medications are not readily available in our country and are only stocked by a few pharmacies. I call on the government to:

• Incorporate diagnosis and holistic treatment of narcolepsy and all rare diseases within UHC. Promote early diagnosis by thoroughly training medical staff and having rare conditions champions in each facility to aid with early diagnosis and access to information about the condition. Invest in more sleep clinics and sleep tests like Multiple Sleep Latency Test, covered by insurance, UHC and NHIF. Encourage more doctors to specialize in neurology and sleep science.
• Start raising awareness of rare conditions and sleep disorders that already exist, both in public and among health practitioners. We need the government to set aside funds for research and  media coverage that correctly describes the causes and impacts of narcolepsy and other rare conditions. Protect the rights of students living with narcolepsy to access quality education.
• Schools and communities need to be made aware of the symptoms so that they can make necessary accommodations and adjustments to support those living with narcolepsy instead of being chased away. This support program maximizes learning whilst maintaining a positive social life thereby reducing risk of secondary complications.
• Popularize genetic counseling and newborn screening, make it pocket-friendly, and accessible to all to promote early diagnosis and treatment interventions for people living with rare conditions. This would in turn enable planning of the possible outcome for both the family and key health stakeholders including the Ministry of Health.