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
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Autoimmune encephalopathy with parasomnia and obstructive sleep apnea.
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Specialists
View all specialists →No specialists are currently listed for Autoimmune encephalopathy with parasomnia and obstructive sleep apnea.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA 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.
Community
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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.