Anne Nduati is a woman on a mission, working to make more people in her country, Kenya, and indeed across the African continent, aware of the sleep disorder Narcolepsy, a condition that her daughter was diagnosed with when young. The organisation she founded, Narcolepsy Awareness Kenya, aims to empower those who suffer from the condition to live their lives to the fullest, but she also hopes to inform and support the families and teachers who look after those children.
LoA heard about Anne Nduati’s story this month and the work she is doing to raise greater social awareness of the condition, and to reduce the stigma that accompanies it as a result of lack of knowledge and acceptance on the part of the public
“As a parent, I would advise that if you have a child with this condition, please take an interest in knowing more – support your child and never be ashamed of the situation. For me personally, if I had ignored the situation in my own family, I could have lost my precious daughter.”
Tell us a little about your organisation, Narcolepsy Kenya and what inspired you to start it.
My name is Anne Nduati, and I am a business lady and the Founder of an organisation called Narcolepsy Awareness Kenya, the first organisation of its kind in Kenya and indeed across Africa. I am based in Nakuru County, Kenya and am a single mother of a 14yr old daughter, Jane Wachera, who each day lives with the effects of the Narcolepsy sleep disorder. For those who do not know about this condition, Narcolepsy is a chronic neurological disorder that affects the portion of the brain that regulates sleep and causes excessive daytime sleep, even when the person is engaged in an active activity such as reading, driving, eating, talking, cooking, swimming, etc.
I started observing my daughter’s unusual behaviours a few years ago and at the time, I did not really understand what they meant. It was strange because she was sleeping too much during the day and the teachers would call me many times during school hours and ask me questions about her falling asleep during class that I simply could not answer. That was when I went to the doctor to ask for advice and who then diagnosed her and said she was Narcoleptic.
What is narcolepsy?
Narcolepsy is a chronic brain disorder that involves poor control of sleep-wake cycles. People with narcolepsy experience periods of extreme daytime sleepiness and sudden, irresistible bouts of sleep that can strike at any time. These “sleep attacks” usually last a few seconds to several minutes. Narcolepsy can greatly affect daily activities. People may unwillingly fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving or operating other types of machinery.
Tell us more about the condition and its impact on your daughter’s life
It is an embarrassing, life impacting condition that affected my daughter so much that she had reached a point of wanting to commit suicide because she felt nobody could understand her. The level of stigmatization around the condition at school was high, yet she leads in her class with top grades, even though she often sleeps the whole of afternoon lessons. My daughter went through counselling in order to understand the condition and its impact, and as a result, she has been able to accept that Narcolepsy is real and something that she has to live with, no matter how difficult it might be.
Tell us more about your organisation and what it is looking to achieve.
After accepting herself as a person living with Narcolepsy, my daughter asked me to grant her wish – that we start an organisation to raise greater awareness and understanding of the condition in Kenya. As a concerned mother, I spoke to a few friends and other affected people living with the condition in the country, and started an organisation to fulfil her wish.
To date, we have identified more and more people who are living with the same condition, and that has been the motivation to start the organization, Narcolepsy Awareness in Kenya, which aims to help identify and support those affected with the condition the society. Narcolepsy. Today, our organisation provides support and advice to 62 affected members. Our Chairman, Mr Simon, who is a teacher at Nakuru Elite School, has been living with Narcolepsy for over 40 years, and will tell everyone that Narcolepsy is real and can affect anybody at any time. We are all potentially at risk of the condition and its impact. Therefore, the need for tolerance, understanding and greater awareness of the condition is so important in Kenya and in Africa as a whole.
“We need to create much greater awareness about the Narcolepsy sleep disorder, and our movement that aims to inform and educate people about it in Kenya and Africa as a whole.”
Tell us about your hopes for the future and for your own daughter.
My daughter sacrifices her free time to create greater awareness and understanding about Narcolepsy – she draws educational pictures for adults and children alike to help them to visualise the impact of this debilitating sleep condition on those who suffer from it. On a personal level, she also encourages me and is very inspirational. Despite her sleep disorder, she holds on to her dream that when she grows up she will be able to successfully study, train and become a neurologist, helping others with similar neurological disorders.
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