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Neuromuscular diseases

Narcolepsy type 1

A sleep disorder in which the brain cannot regulate sleep and wakefulness. There is excessive sleepiness during the day and sudden muscle weakness brought on by emotions.

Not part of the panel of Türkiye's National Newborn Screening Programme (heel-prick test). Source

Orphanet has a guideline for emergency doctors for this disease (language: French, Spanish). See on Orphanet

Prepare an emergency card

This page is translated from the Turkish original.

This disease is followed through the “Neuromuscular diseases” group.

Understanding the disease

This section has not yet been reviewed by a physician. It summarises patient information from sources such as MedlinePlus, Orphanet and the NHS in plain language. The disease can differ from person to person; talk to your doctor about diagnosis and treatment.

What happens in this disease?

In type 1 narcolepsy, the cells in the brain that make orexin are lost. Orexin is a substance that regulates wakefulness, sleep and muscle tone. The immune system is thought to play a role in this loss. The disease usually begins in the teenage years or young adulthood. It generally lasts for life.

Which symptoms can occur?

Symptoms vary from person to person.

  • Excessive sleepiness during the day and sudden sleep attacks
  • Sudden muscle weakness brought on by laughter, anger or surprise, called cataplexy
  • Being briefly unable to move while falling asleep or waking up
  • Seeing dream-like images that feel real while falling asleep
  • Waking up often at night
  • Difficulty concentrating

How is it diagnosed?

The diagnosis is made by a sleep specialist. An overnight sleep study, called polysomnography, is done. The next day, how quickly the person falls asleep is measured. If needed, fluid taken from the lower back is checked for signs of the disease.

Treatment and care

There is no cure for the disease, but the symptoms can be controlled. Regular sleep times and planned daytime naps help. There are medicines that help a person stay awake during the day and prevent sudden muscle weakness. In 2026, the first medicine targeting the missing orexin signal was approved in the USA. Avoiding alcohol and regular exercise are recommended. Driving and safety at work should be discussed with the doctor. The doctor who follows the disease decides which treatment is suitable.

For the family: inheritance and genetic counselling

Most cases occur without anyone else in the family being affected. There is no specific pattern of inheritance. Some immune genes increase the risk. The risk for mothers, fathers, brothers, sisters and children is higher than in the general population. You can get genetic counselling if you have questions.

Source: NHS: Narcolepsy · MedlinePlus Genetics: Narcolepsy · FDA: FDA Approves First Drug to Treat the Full Range of Narcolepsy Type 1 Symptoms · Orphanet: Narcolepsy type 1 (ORPHA:2073)

Key facts

How common is it?
Prevalence: 1-5 per 10 000 (Europe)
How is it inherited?
Unknown
When does it usually start?
Adolescence, Adulthood, Childhood
Gene(s) involved
HCRT, HLA-DRB1, HLA-DQB1, MOG, TNFSF4, CTSH

These facts are taken from Orphanet and MedlinePlus records (last checked: October 7, 2026). Frequency values are approximate ranges.

You are not alone: patient associations in Türkiye

Non-profit patient and family organizations in Türkiye working on this disease or disease group. Links are for information; Doktorclub is not affiliated with these organizations and does not endorse them.

We could not find a patient association specific to this disease.

For all rare diseases: Nadir Hastalıklar Federasyonu

Support and help

Doktorclub does not diagnose, recommend treatments or refer you to hospitals or doctors. These pages are meant to help you talk with your doctor.

News about Narcolepsy type 1

Clinical trials (ClinicalTrials.gov)

A clinical trial is a regulated study that tests whether a new treatment is safe and whether it works, in patients who volunteer. Most trials look for a certain age, genetic change and health condition. Taking part is voluntary.

This list is not a treatment recommendation. Treatments tested in phase 1–3 trials are investigational (experimental): their efficacy and safety have not yet been proven and they are not approved treatments. Taking part depends on each trial’s criteria and a physician’s assessment; the first step is to talk to the doctor who manages your care.

Questions you can ask your doctor

  • Could this trial be suitable for us?
  • If we take part, how would current treatment and check-ups be affected?
  • Where does the trial take place, and how are travel and accommodation handled?
  • What happens if we want to leave the trial?

ClinicalTrials.gov lists 18 active interventional studies for this disease. 17 are recruiting now; none has a site in Türkiye. Last checked: October 7, 2026.

Selected records (studies with a site in Türkiye first):

See all studies on ClinicalTrials.gov · Joining clinical trials

Neuromuscular diseases: other news

Medical codes (for talking with your doctor and finding sources)

These codes identify the disease in international classifications and databases. They can help when you talk with your doctor or look for reliable sources.

Orphanet code: ORPHA:2073 · ICD-11 7A20.0

Codes checked against WHO ICD-11 and Orphanet on October 7, 2026.

This page provides general information and does not replace diagnosis or treatment. Talk to your doctor about symptoms, diagnosis and treatment.

The information on these pages is for general information only and does not replace medical advice. Talk to your doctor about diagnosis and treatment decisions. In an emergency in Türkiye, call 112.

Every update is based on an open source and labeled with its level of evidence. No advertising and no drug brand names. Our scientific principles

This page was translated from Turkish by the Doktorclub editorial team.