Living with Susac syndrome
An autoimmune condition affecting tiny blood vessels in the brain, eye, and inner ear, causing confusion, hearing loss, and vision loss.
Understanding Susac syndrome
It has three main features: brain disease (encephalopathy), hearing loss, and vision loss. Some people don't have all three and have only some combinations. It affects women more than men. Doctors diagnose it with an exam and imaging tests. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Confusion
- Thinking and memory problems
- Headache
- Hearing loss
- Vision loss
- Low muscle tone
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, brain and nervous system specialists and eye disease specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and Hearing Loss Association of America may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Autoimmune Association, Hearing Loss Association of America
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the cause is still unknown. It is an autoimmune condition.
Also known as: red-m; retinocochleocerebral vasculopathy; retinopathy-encephalopathy-deafness associated with microangiopathy; sicret syndrome; small infarctions of cochlear, retinal and encephalic tissue
Patient organizations
- Autoimmune AssociationSusac syndrome · United States
- Hearing Loss Association of AmericaSusac syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Susac syndrome.
Explore research for Susac syndrome
Explore actively recruiting Susac syndrome studies with HealthSpark.
Find actively recruiting studies for Susac syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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