Narcolepsy Africa Foundation partners with organizations across six continents to create World Narcolepsy Day
Narcolepsy Africa Foundation is excited to announce that it is coming together with 22 organizations around the world to establish World Narcolepsy Day. This ground-breaking day, which will take place on Sunday, Sept. 22, 2019, will be dedicated to raising critical awareness for narcolepsy on a global scale.
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 or misdiagnosed.
In Kenya and across Africa Narcolepsy still remains unknown 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. Many individuals who have been clinically diagnosed have started reaching out and those who have the symptoms have started contacting us for diagnosis.
World Narcolepsy Day is a powerful new opportunity for the entire community, including patient-advocacy organizations, researchers, clinicians, drug developers, local communities, caregivers and individuals.
“Our scientific understanding of narcolepsy is rapidly advancing and new treatment options are on the horizon,” said Emmanuel Mignot, MD, PhD, Director of the Stanford Center for Sleep Sciences and Medicine. “Thus, this is a critical time to elevate international awareness through World Narcolepsy Day, to help people to receive proper diagnosis and treatment sooner.”
On Sunday, Sept. 22, 2019, patient-advocacy organizations will celebrate with various activities and efforts to advance awareness, education, support, research, and advocacy. Communities and individuals are encouraged to take part in these initiatives and to raise their voices on social media using the hashtag #WorldNarcolepsyDay.
“Getting involved with patient organizations can provide critical social support for individuals and families facing narcolepsy,” described Yves Dauvilliers, MD, PhD, Professor of Neurology and Physiology at the University of Montpellier, France. “I applaud this international group of organizations for coming together to establish World Narcolepsy Day and I look forward to working alongside them to raise awareness and improve outcomes.”
The worldwide group of organizations establishing World Narcolepsy Day include:
- Asociación de Narcolepsia e Hipersomnias de Argentina (narcolepsia.com.ar)
- Asociación Española de Narcolepsia (narcolepsia.org)
- Association Française de Narcolepsie-Cataplexie et Hypersomnies Rares (https://www.anc-narcolepsie.com/)
- Associazione Italiana Narcolettici e Ipersonni (narcolessia.org)
- Danish Narcolepsy Association (dansknarkolepsiforening.dk)
- FACES of Narcolepsy (facesofnarcolepsy.org)
- Flemish Federation for Narcolepsy (narcolepsievlaanderen.be)
- Hypersomnia Foundation (hypersomniafoundation.org/)
- Japan Narcolepsy Association, Naruko-kai (or.jp)
- Narcolepsy Africa Foundation (org/)
- Narcolepsy Association Finland (narkolepsia.fi)
- Narcolepsy Australia (narcolepsysupportaustralia.com/)
- Narcolepsy Ireland (narcolepsyireland.org/)
- Narcolepsy UK (narcolepsy.org.uk/)
- Nederlandse Vereniging Narcolepsie (narcolepsie.nl)
- Project Sleep (project-sleep.com)
- PWN4PWN (pwn4pwn.org)
- Swedish Narcolepsy Association (narkolepsiforeningen.se)
- Swiss Narcolepsy Association (narcolepsy.ch)
- SOUND Ireland (soundireland.ie/)
- TATU (tatury.fi/)
- Wake Up Narcolepsy (wakeupnarcolepsy.org/)
Please feel free to follow the Narcolepsy Development in Kenya by staying up to date with our activities follow us in our Social Media accounts with the #usingiziinitiative
About Narcolepsy Africa Foundation (NAF)
The group was initiated when a group of Kenyans Living with Narcolepsy and their loved ones came together for a common cause that is, to create Narcolepsy awareness in Kenya and across Africa.
We come forth to highlight the plight of Persons Living Narcolepsy and how it negatively impacts their quality of life and suffer from stigmatization in all angles of life: Students who continue to be punished for their “sleepy habits”, relationships/marriages that break because of that sleepy partner, struggle to find and /or secure employment and always being at a disposition of being depressed, secluding and undervaluing oneself because of the overall stigma from the society.
We are also targeting the medical fraternity to reintroduce them to Narcolepsy and its symptoms because we have all been turned away by general practitioners because they claimed we were “healthy” either we are faking the symptoms or all we needed is a proper sleep schedule.
Narcolepsy Africa Foundation is planning to a small meet up on the 22nd of September and we would love to hear from you if you were able to help by donating your time, or skills, or could come along on the day or even take part. Also, we would be very grateful if you could help us to publicize our event by sharing the details with your work colleagues, friends, family and Social Media pages/website.
There is much information at https://project-sleep.com/worldnarcolepsyday/ and we are encouraging everyone to turn in and show their support.
We would also be grateful if you would consider displaying some of our activity details in your workplace, notice board, Social Media pages/websites, hospital or clinic, and help us alert as many people as possible to the World Narcolepsy day and any other future events.
Narcolepsy Africa Foundation
Maryanne Njuguna | Patient Advocate (Co-founder)
+254 727 680056 | firstname.lastname@example.org