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Our Social Media Pages are active and our email address and inboxes get responded to promptly. Our support group is available to anyone with Narcolepsy amongst other sleep disorders, their family and friends, along with anyone having an interest in the illness.

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    Frequently Asked Questions

    Here are some of the common FAQs we encounter:

    Narcolepsy is a neurological condition that disrupts sleep-wake cycles. Key symptoms include excessive daytime sleepiness, sudden muscle weakness (cataplexy), sleep paralysis, vivid hallucinations, and disrupted nighttime sleep. Track your symptoms with a sleep diary and consult a neurologist or psychiatrist. While sleep studies are the diagnostic standard, access in Africa is limited; online consultations may help. Narcolepsy is often misdiagnosed, so rule out other conditions like sleep apnea or insomnia.

    There are two types of narcolepsy:

    1. Narcolepsy with cataplexy, also called narcolepsy type 1
    2. Narcolepsy without cataplexy, also called narcolepsy type 2

    Idiopathic hypersomnia (IH) is another chronic neurological condition that causes excessive daytime sleepiness. One key difference from narcolepsy is that naps usually don’t feel refreshing for people with IH. Learn more about IH and find support on the Hypersomnia Foundation’s website. https://www.hypersomniafoundation.org/

    For individuals with narcolepsy, elements of rapid eye movement (REM) sleep often occur during wakefulness, disrupting normal sleep patterns. At night, they may quickly transition into REM sleep without experiencing the usual non-rapid eye movement (NREM) stages. Similarly, REM-related phenomena, such as cataplexy, sleep paralysis, and hallucinations, can occur during wakefulness or drowsiness, blurring the boundaries between sleep and being awake.

    In 1999, researchers found that narcolepsy with cataplexy is caused by a lack of hypocretin, a neurotransmitter regulating alertness and the sleep-wake cycle. While the causes of narcolepsy without cataplexy and idiopathic hypersomnia remain unclear, your symptoms are valid.

    In Africa, limited access to sleep clinics means diagnosis often relies on clinical history. Persistent testing may be needed. Connect with us for support, advice, and referrals to specialists familiar with local challenges.

    Narcolepsy is considered a broad spectrum condition, meaning the severity and combination of symptoms differ between individuals. Some may experience mild disturbances, while others face significant impacts on daily life, requiring tailored management and support.

    Narcolepsy isn’t strictly hereditary, but genetics can play a role. The risk of passing it to your child is very low. It’s not contagious. If concerned, monitor for symptoms like excessive sleepiness and consult a doctor. Genetic and environmental factors both influence its development.

    There is no cure for narcolepsy, but symptom management varies by person. Treatment often involves medications, scheduled naps, lifestyle adjustments, and social support. Medications help manage symptoms, while naps improve daily functioning. Lifestyle changes like better sleep hygiene, diet, and exercise enhance quality of life. Social support through groups, conferences, or online communities provides connection and encouragement. Explore resources for workplace and school accommodations.

    The major classes of narcolepsy medications include:

    • Nighttime and histamine – directed medications to decrease excessive daytime sleepiness and cataplexy
    • Wake-promoting or stimulant medications to increase alertness
    • Antidepressant medications to decrease cataplexy

    Narcolepsy is widely misunderstood. Many people mistakenly attribute excessive sleepiness to laziness or inattentiveness, while others downplay the impact of daytime sleep episodes. However, narcolepsy is a serious medical condition that can profoundly affect your life. It disrupts nighttime sleep, leading to health challenges, emotional and social difficulties, and an increased risk of accidents. Raising awareness ensures individuals get the understanding, support, and treatment they need to thrive.

    Narcolepsy is considered an invisible disability and a rare condition. It often requires personalized accommodations and lifelong medical interventions to help individuals thrive. Recently, Kenya’s Ministry of Health recognized rare diseases as disabilities, meaning those living with narcolepsy are covered under the National Council for Persons with Disabilities (NCPWD) policies and may qualify for a disability card.

    Eligibility is assessed on a case-by-case basis. To improve your chances:

    • Maintain detailed medical records.
    • Obtain a comprehensive medical report from a knowledgeable doctor that clearly outlines how narcolepsy affects your productivity, daily life, relationships, and social interactions.
    • Be prepared to explain why you need the benefits provided by the NCPWD.

    These steps can help you access the support and protections you deserve.

    In Kenya, consult a psychiatrist at any Level 4 or 5 hospital near you for evaluation. For diagnosis and disability registration, visit Mathari National Teaching and Referral Hospital in Nairobi, which offers affordable psychiatric services and EEG testing. Mathari is also gazetted by NCPWD to conduct Disability Medical Assessments. Check the NCPWD website for other gazetted hospitals. For specialized sleep issues, private clinics like Brain & Nerve Diagnostics are available.

    Blood Donation
    People with narcolepsy may face restrictions when donating blood. Medications commonly used to treat narcolepsy, such as modafinil or sodium oxybate, could disqualify individuals as they might affect blood safety. It’s essential to check with your local blood donation services for specific eligibility criteria.

    Organ Donation
    Organ donation is assessed on a case-by-case basis. While narcolepsy itself may not automatically disqualify someone, associated health conditions or medications could impact eligibility. Transplant teams evaluate your medical history and overall health before approving organ donation.

    If you’re considering donating blood or organs, consult your healthcare provider and local donation services for detailed advice tailored to your situation.