It is estimated that anywhere from 135,000 to 200,000 people in the United States have narcolepsy. Symptoms often start in childhood, adolescence, or young adulthood (ages 7 to 25), but can, in fact, occur at any time in life. However, since this condition often goes undiagnosed, the number may be higher.
According to Genetics Home Reference, new observations show that Black patients with narcolepsy tend to have lower CSF hypocretin levels, earlier symptom onset, and more severe daytime sleepiness but lower rates of cataplexy. This group with narcolepsy is often misdiagnosed with other conditions, such as psychiatric disorders or emotional problems and it can take years for some to get the proper diagnosis.
Where does it start?
Narcolepsy may have several causes. Nearly all people with narcolepsy who have cataplexy have extremely low levels of the naturally occurring chemical hypocretin, which promotes wakefulness and regulates REM sleep. Hypocretin levels are usually normal in people who have narcolepsy without cataplexy.
Although the cause of narcolepsy is not completely understood, current research suggests that narcolepsy may be the result of a combination of factors working together to cause a lack of hypocretin. These factors include:
Autoimmune disorders. When cataplexy is present, the cause is most often the loss of brain cells that produce hypocretin. Although the reason for this cell loss is unknown, it appears to be linked to abnormalities in the immune system.
Autoimmune disorders occur when the body's immune system turns against itself and mistakenly attacks healthy cells or tissue. Researchers believe that in individuals with narcolepsy, the body’s immune system selectively attacks the hypocretin-containing brain cells because of a combination of genetic and environmental factors.
A number of factors may increase a person's risk of narcolepsy or cause an autoimmune problem, including:
- an inherited genetic fault
- hormonal changes, including those that occur during puberty or the menopause
- major psychological stress
- a sudden change in sleep patterns
- an infection, such as swine flu or a streptococcal infection
- having the flu vaccine Pandemrix
Family history. Narcolepsy is a very sporadic condition with most occurrences happening in people with no known family history at all. However, clusters in families sometimes occur. Up to 10% of individuals diagnosed with narcolepsy and cataplexy report having a close relative with similar symptoms.
For example, narcolepsy can be passed between:
- Parents
- Siblings
- Children
First-degree relatives of people with narcolepsy and cataplexy actually have a 40 times greater risk of developing the condition compared to others.
Brain injuries. Narcolepsy can sometimes occur as a result of an underlying condition that damages the areas of the brain that produce hypocretin. Rarely, narcolepsy results from traumatic injury to parts of the brain that regulate wakefulness and REM sleep or from tumors and other diseases in the same regions, but it can happen.
- For example, narcolepsy can sometimes develop after:
- a head injury
- a brain tumor
- multiple sclerosis (MS)
- Encephalitis
Dealing with narcolepsy? Consult with your doctor to explore your treatment options and find out more information on sleep disorders by visiting our Health Conditions page on BlackDoctor.org.
Tia Muhammad, BS, is an award-winning freelance content & media creative, copywriter, blogger, digital designer, and marketing consultant. She owns the boutique content and digital media company, jackieGLDN|studio.