What Does It Cost to Live With Narcolepsy?

Narcolepsy is a chronic disorder caused by changes to your brain’s sleep-wake cycle. This results in excessive daytime sleepiness and sometimes the irresistible urge to fall asleep.1

Half of those living with narcolepsy also experience cataplexy. Cataplexy is sudden loss of muscle tone and voluntary muscle control. It is often triggered by sudden, strong feelings. These can be happy emotions like laughter or less pleasant ones like anger or fear.1

Unfortunately, narcolepsy can impair quality of life. The sleepiness it causes can interfere with your day-to-day function. It can affect your job, education, mental health, and your family. These effects have both a literal and figurative cost. Experts are studying these costs to learn how to better support those living with narcolepsy.1,2

Financial burden

Any disorder that requires medical care can place a financial burden on those living with it. One study found that people living with narcolepsy spend double in medical costs compared to those without it. This money goes to office visits, emergency visits, and medicines.1

Narcolepsy can present with unclear signs and symptoms. Also, there are no tests that can give a definitive diagnosis. It may take doctors up to 10 years before they can give someone their diagnosis. During this time, people are often confused and concerned about their symptoms. They may visit their doctor many times. Each visit could have a co-pay. Doctors also may order many lab tests or imaging. These costs can quickly add up.1

Once diagnosed, your doctor may prescribe drugs to improve your symptoms. This can result in another bill. Narcolepsy is linked to other conditions, including depression, anxiety, and bipolar disorder. Treatment for these disorders can also increase your medical costs.3

The daytime sleepiness of narcolepsy can put you in danger. It can make you more likely to be in a car accident, misuse heavy equipment, or accidentally hurt yourself. This can result in injuries or a visit to the emergency room.3

Narcolepsy is a chronic disease without a cure. It requires lifelong treatment. The financial burden may last for decades.1

Effects on work

Narcolepsy can have serious effects on your career. It has been linked to time missed from work, impaired functioning at work, accidents, lower wages, and unemployment.2

Symptoms often begin when someone is in their teens or 20s, which is an important time for education and development. Delays and difficulties with education can keep someone from advancing in their career.3

Time missed at work can also affect how you advance in your career. Some people living with narcolepsy may need to take short-term disability. Other people have even reported losing their jobs. This can have serious effects on income and job satisfaction.3

Mental health burden

Narcolepsy has widespread effects on almost every aspect of life. It can cause difficulties with family at home, at school, and at work. Unfortunately, this can worsen your quality of life and mood.3

Early diagnosis may help you reach treatment earlier. When symptoms are better controlled, you may be able to feel more in control of your life.3

How does this affect me?

The earlier narcolepsy is diagnosed, the smaller the burden can be. Early diagnosis means early treatment, which can reduce medical costs and greatly improve quality of life. Researchers hope that deeper knowledge of narcolepsy’s effects can help them improve care for those with the condition.3

Their goal is to improve mental health and job satisfaction by increasing understanding and early treatment. If you have more questions about narcolepsy and how it is impacting your life, reach out to your doctor.1

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