Autoimmune encephalopathy with parasomnia and obstructive sleep apnea

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ORPHA:420789G04.8
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Overview

Autoimmune encephalopathy with parasomnia and obstructive sleep apnea is a rare condition where the body's immune system mistakenly attacks the brain. This causes a combination of brain inflammation (encephalopathy), abnormal behaviors during sleep (parasomnia), and episodes where breathing repeatedly stops and starts during sleep (obstructive sleep apnea). The disease does not yet have a widely used common nickname, but it is sometimes referred to by its Orphanet code 420789 or grouped under autoimmune sleep disorders. When the immune system attacks brain tissue, it can disrupt the parts of the brain that control sleep, breathing, and behavior. This leads to a wide range of symptoms including confusion, memory problems, unusual movements or behaviors at night, and poor sleep quality. The sleep breathing problems can make daytime fatigue and brain fog even worse. Treatment focuses on calming the immune system using therapies such as steroids, intravenous immunoglobulin (IVIG), or plasma exchange. Managing the sleep apnea with devices like CPAP machines is also an important part of care. Because this condition is so rare, treatment plans are often tailored individually, and ongoing research is needed to better understand the best approaches.

Also known as:

Key symptoms:

Confusion or disorientationMemory problems or memory lossUnusual or complex behaviors during sleep, such as acting out dreamsRepeated pauses in breathing during sleepLoud snoringExcessive daytime sleepinessMood changes, anxiety, or irritabilitySeizures in some casesDifficulty concentrating or thinking clearlyHeadaches upon wakingPersonality changes

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Autoimmune encephalopathy with parasomnia and obstructive sleep apnea.

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No actively recruiting trials found for Autoimmune encephalopathy with parasomnia and obstructive sleep apnea at this time.

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Search ClinicalTrials.gov ↗Join the Autoimmune encephalopathy with parasomnia and obstructive sleep apnea community →

No specialists are currently listed for Autoimmune encephalopathy with parasomnia and obstructive sleep apnea.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Autoimmune encephalopathy with parasomnia and obstructive sleep apnea.

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Community

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Latest news about Autoimmune encephalopathy with parasomnia and obstructive sleep apnea

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.Which autoimmune antibodies were found in my tests, and what does that mean for my treatment?,How long will I need to take immune-suppressing medications, and what are the risks?,What type of CPAP or sleep device is best for my sleep apnea, and how do I use it correctly?,What signs should prompt me to go to the emergency room?,Is there a risk that this condition will come back after treatment, and how would we know?,Are there any clinical trials or research studies I could participate in?,What support resources are available for me and my family while managing this condition?

Common questions about Autoimmune encephalopathy with parasomnia and obstructive sleep apnea

What is Autoimmune encephalopathy with parasomnia and obstructive sleep apnea?

Autoimmune encephalopathy with parasomnia and obstructive sleep apnea is a rare condition where the body's immune system mistakenly attacks the brain. This causes a combination of brain inflammation (encephalopathy), abnormal behaviors during sleep (parasomnia), and episodes where breathing repeatedly stops and starts during sleep (obstructive sleep apnea). The disease does not yet have a widely used common nickname, but it is sometimes referred to by its Orphanet code 420789 or grouped under autoimmune sleep disorders. When the immune system attacks brain tissue, it can disrupt the parts of

How is Autoimmune encephalopathy with parasomnia and obstructive sleep apnea inherited?

Autoimmune encephalopathy with parasomnia and obstructive sleep apnea follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.