Overview
Susac syndrome (also called retinocochleocerebral vasculopathy or RED-M syndrome) is a rare autoimmune disease where the body's immune system mistakenly attacks the tiny blood vessels in three specific parts of the body: the brain, the retinas (the light-sensitive tissue at the back of the eyes), and the inner ears. This attack causes these small vessels to become inflamed and blocked, cutting off blood supply to these areas and causing damage over time. The three main areas affected lead to three main groups of symptoms: problems with thinking and memory (from brain involvement), vision loss (from eye involvement), and hearing loss with ringing in the ears (from inner ear involvement). Not everyone has all three problems at the same time, which can make the disease hard to diagnose early. It most commonly affects young adults, especially women between the ages of 16 and 40. Treatment focuses on calming the immune system using medications like corticosteroids (such as prednisone), intravenous immunoglobulin (IVIG), and other immune-suppressing drugs. With early and aggressive treatment, many people can recover significantly, though some may have lasting effects. The disease can come in episodes (flares) or follow a more continuous course.
Also known as:
Key symptoms:
Memory loss and confusionDifficulty thinking clearly or concentrating (brain fog)Hearing loss, often in both earsRinging or buzzing in the ears (tinnitus)Vision loss or blind spotsHeadachesSlurred speechPersonality or mood changesDizziness or balance problemsPsychiatric symptoms such as paranoia or depressionDifficulty walkingFatigue
Clinical phenotype terms (23)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Susac syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Susac syndrome at this time.
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Specialists
View all specialists →No specialists are currently listed for Susac syndrome.
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 Susac syndrome.
Community
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Start the conversation →Latest news about Susac syndrome
1 articlesCaregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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.How certain are you about the diagnosis of Susac syndrome, and what tests confirmed it?,Which parts of my body — brain, eyes, or ears — are currently affected, and how severe is the damage?,What treatment plan do you recommend, and how long will I need to take immune-suppressing medications?,What are the signs that the disease is getting worse or coming back, and when should I go to the emergency room?,Are there any clinical trials I might be eligible for?,What long-term effects should I expect, and what can I do to protect my hearing and vision?,Should I see a cognitive specialist or neuropsychologist to help with memory and thinking problems?
Common questions about Susac syndrome
What is Susac syndrome?
Susac syndrome (also called retinocochleocerebral vasculopathy or RED-M syndrome) is a rare autoimmune disease where the body's immune system mistakenly attacks the tiny blood vessels in three specific parts of the body: the brain, the retinas (the light-sensitive tissue at the back of the eyes), and the inner ears. This attack causes these small vessels to become inflamed and blocked, cutting off blood supply to these areas and causing damage over time. The three main areas affected lead to three main groups of symptoms: problems with thinking and memory (from brain involvement), vision loss
How is Susac syndrome inherited?
Susac syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Susac syndrome typically begin?
Typical onset of Susac syndrome is adult. Age of onset can vary across affected individuals.