What is sarcoidosis?

Sarcoidosis is a disorder of unknown cause which can affect almost any organ in the body; the lungs, eyes, skin and liver are the most frequently so. In many cases the disease is mild and self limiting: in others it may run a fatal course. The prevalence of sarcoidosis (how many people are affected by it) is 100 to 400 in every million people in America and Scandinavia and about 250 per million in the UK.

The disease is caused by the development of inflammation within the tissues affected; this is characterised by the development of groups of inflammatory cells which come together to form clumps of tissue known as epithelioid granulomas in affected organs. These are the sarcoid granulomas. The inflammation prevents that part of the affected tissue from working as it should, causes damage if left untreated for some time, and can lead to the laying of scar tissue which is irreparable.

For the majority of patients the disease is self-limiting, so it can go away on its own. This is common when it affects the lungs, lymph nodes and skin. These patients tend not to receive treatment. For others it may come and go and treatment is usually recommended. Treatment is always recommended, and is essential, for patients whose disease is severe, affects many organs and does not settle down on its own.

Neurological complications arise in 5-10% of all cases of sarcoidosis, so are very rare, but sometimes the neurological problem can develop before the other signs of sarcoid develop, making it a very difficult disorder to diagnose.

Neurosarcoidosis at the Royal Free London

The Royal Free Hospital is a major centre for the investigation and treatment of sarcoidosis in the UK. Together with the Royal Brompton Hospital, we undertake research into how the disease develops and can be treated.

There are three sarcoidosis clinics at the Royal Free Hospital, including one for neurosarcoidosis. It is the only clinic in the whole of the United Kingdom and Ireland. Patients in the UK can be referred by their GP. Patients, their relatives and doctors may email the centre for information or advice on how to refer or be referred for treatment, care and research.

Patients are strongly encouraged to attend the centre for neurosarcoidosis so that they can be sure to receive the most up to date treatment and to help further our understanding of the illness through experience and both clinical and laboratory based research.

Find out more about neurosarcoidosis: