Superficial siderosis

Also known as: SS, superficial intraventricular surface siderosis, infratentorial superficial siderosis,

What is superficial siderosis (SS)?

Superficial siderosis is a rare degenerative condition affecting the brain and spinal cord.

SS occurs after continuous slow internal bleeding in the subarachnoid space, a brain area which contains the cerebrospinal fluid and major blood vessels.

This build-up of blood results in iron deposits forming, causing toxicity and degeneration.

There are two types of superficial siderosis – cortical SS and infratentorial SS

What causes superficial siderosis?

Superficial siderosis is usually caused by a head or spinal injury, which can occur years before the first symptoms appear.

This initial event causes slow bleeding into the cerebrospinal fluid surrounding the brain and spinal cord.

As the blood molecules begin to break down, the leftover iron begins to form dangerous clots around the brain and inside the spinal cord canal.

Other common causes for SS can include tumours in the central nervous system and malformations of major blood vessels.

There is currently no cure for superficial siderosis. Proper recognition and diagnosis of SS symptoms are vital for early intervention and preparation for care planning.

Some therapy methods include chelation therapy, a medical procedure that involves the intake of special medicine to reduce the heavy iron congestion in the blood.

Symptoms of superficial siderosis

Both types of superficial siderosis share many symptoms with other neurological conditions and are often confused with multiple sclerosis (MS), or Parkinson’s.

The three main symptoms of superficial siderosis include:

  • Sensorineural hearing loss – damage to the inner ear
  • Ataxia – problems with balance and coordination
  • Myelopathy – compression of the spinal cord.

Additionally, some rarer associated symptoms of SS can occur, including:

  • Cognitive impairments
  • Mood disturbance
  • Uncontrolled eye movements
  • Reduced visual memory
  • Spasticity – unusual muscle tightness
  • Bladder and bowel dysfunction
  • Peripheral neuropathy – degeneration of the peripheral nerves
  • Difficulty swallowing.

Are you affected by superficial siderosis?

If you’re affected by superficial siderosis, The Brain Charity can support you.

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

We provide practical help on all aspects of living with superficial siderosis, from emotional support such as counselling, phone befriending and group therapy, to social activities to help people with superficial siderosis 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. We endeavour to respond to all enquiries within 10 working days.

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 superficial siderosis?

We support carers, friends, and family too.

Are you a carer for, or a relative of someone who has superficial siderosis? It’s also important for you to look after your mental and physical wellbeing.

The Brain Charity provides free support for carers, friends and family with any form of neurological conditions, including superficial siderosis, from anywhere in the UK.

We also run an additional carer advocacy service for all carers in Liverpool, regardless of what 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 a Carer’s Allowance.
Find out some of the ways we support carers below.

Other resources

Library of Resources

The Brain Charity library has a range of resources on superficial siderosis and on many other disability-related issues.

Support Groups

Support groups at The Brain Charity

Are you interested in setting up a superficial siderosis support group, or do you already run one? Email to let us know.

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

Facebook support groups for people living with SS

Friends of superficial siderosis sufferers unite


Superficial sidersosis


Superficial siderosis – The Silent Bleed


Other charities

The Silent Bleed

The Silent Bleed (an organisation and support group dedicated to raising funds for SS research and acting as an information hub for SS in the UK)

Telephone: 0787 062 5357



Rare Disease

Rare Disease (an organisation dedicated to raising funds and awareness about rare diseases, such as SS, based in the UK)

Telephone: 0300 124 0441




Superficial Siderosis Research Alliance