Neurosarcoidosis, Besnier-Boeck-Schaumann disease

What is sarcoidosis?

Sarcoidosis is a systemic disorder which can affect any organ of the body – most commonly the lungs, skin and eyes.

It is a rare condition that causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body.

What causes sarcoidosis?

The cause of sarcoidosis is thought to be an overreaction of the body’s immune system where, after fighting an infection, the white blood cells begin to attack the body’s own tissue. This is also known as an autoimmune condition.

In the UK around 1 in every 10,000 people have sarcoidosis and every year around 3,000 to 4,000 people are diagnosed with the condition. Sarcoidosis is prevalent in both men and women and can occur at any age, but commonly affects adults in their 30s or 40s.

What are the symptoms of sarcoidosis?

In addition to the granulomas mentioned above, symptoms may also include a shortness of breath, a persistent cough, pains in joints, muscles or bones or numbness/weakness of the face, arms and/or legs.

Patients with sarcoidosis may feel tired and lethargic (fatigued), lose weight or experience fevers and night sweats.

Sometimes, the symptoms of sarcoidosis start suddenly and don’t last long. In other patients, the symptoms may develop gradually and last for many years.

People with acute sarcoidosis may have sudden symptoms which won’t last very long such as: swollen glands, fever, tiredness, joint pains and lumps or rashes on the legs.

People with chronic sarcoidosis will have fewer symptoms, but the condition will last for longer and can get worse over time.

Some people don’t have any apparent symptoms at all and are told they have sarcoidosis after having a routine chest X-ray or other investigations.

Sarcoidosis is very rarely fatal and is often a subsidiary of other issues such as lung and heart conditions.

Are you affected by sarcoidosis?

If you’re affected by sarcoidosis, 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 sarcoidosis, emotional support such as counselling, phone befriending and group therapy and social activities to people with sarcoidosis 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 sarcoidosis

We support carers, friends and family too

Are you a carer for or relative of someone with sarcoidosis? 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 sarcoidosis, from anywhere in the UK.

We also run an 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

The Brain Charity's library

The library at The Brain Charity has a range of resources on sarcoidosis and on a wide range of disability-related issues.

Support groups

Sarcoidosis UK - Sarcoidosis Support Hub

Click here to find your closest sarcoidosis support group.

Phone: 020 3389 7221


Action for Pulmonary Fibrosis


Support Line: 01223 785 725


Click Here  to find a support group near you.

Support groups at The Brain Charity

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

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

Other charities

Sarcoidosis UK

Sarcoidosis Support Hub – click here for access to a nurse helpline, support groups and online support.

Sarcoidosis and children – click here for more information.

Phone: 020 3389 7221


Action for Pulmonary Fibrosis


Phone: 01733 839 642

Support Line: 01223 785 725