Susac’s syndrome

retinocochleocerebral vasculopathy, SICRET syndrome, RED-M,

What is Susac’s syndrome?

Susac’s syndrome is a rare autoimmune condition where the immune system mistakenly causes the lining of certain blood vessels to swell. This can lead to changes in vision, hearing and brain function.

Although there is no cure, treatment can help manage symptoms and lower the risk of lasting health problems. For autoimmune conditions like Susac’s syndrome, medication can help control the immune system and reduce the problems it can cause.

What causes Susac’s syndrome?

Susac’s syndrome is thought to be caused by inflammation in the blood vessels supplying the brain, eyes and ears. Over time this can reduce blood flow, making it difficult for these organs to receive the oxygen they need to function well.

What are the symptoms of Susac’s syndrome?

The symptoms of Susac’s syndrome vary from person to person and they may develop gradually. In some cases the condition has been seen to improve, while other people may experience flare-ups over time.

Symptoms include:

  • Severe or persistent headaches
  • Confusion, memory problems or difficulty concentrating
  • Changes in personality, behaviour or mood
  • Extreme tiredness or drowsiness
  • Blurred vision, blind spots or loss of vision in part of one eye
  • Sudden hearing loss, tinnitus (ringing in the ears) or vertigo
  • Dizziness or problems with balance and coordination
  • In some cases, seizures

These symptoms are similar to those of other neurological conditions such as multiple sclerosis, making the condition difficult to diagnose. However, specialised eye tests can reveal tiny blockages, known as occlusions, in the blood vessels of the retina. Doctors refer to these as branch retinal artery occlusions (BRAOs) – a key feature of Susac’s syndrome.

Are you affected by Susac's syndrome?

If you’re affected by Susac’s syndrome, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with Susac’s syndrome, emotional support such as counselling and group therapy and social activities to people with Susac’s syndrome from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with Susac's syndrome

We support carers, friends and family too

Are you a carer or relative of someone with Susac’s syndrome? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including Susac’s syndrome, from anywhere in the UK.
We also run additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance.
Find out some of the ways we support carers below.

Other resources

Support groups

Support groups at The Brain Charity

Are you interested in setting up a Susac’s syndrome support group, or do you already run one?

Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here

Other charities

Rare Disease UK