Lupus

Systemic lupus erythematosus (SLE), S.L.E., neuropsychiatric lupus, neurocognitive dysfunction, central nervous system lupus

What is lupus?

Lupus is an autoimmune disorder where the body’s natural defence system attacks healthy tissues of its own. Sometimes the body will attack and damage the skin, brain and the nervous system. When the nervous system is attacked, it can cause neurological symptoms which 75% of people diagnosed with lupus have reported.

What causes lupus?

There are many possible causes of lupus. Some causes include sunlight, hormonal changes and having a viral infection. It has been found that lupus affects women more than men and are most likely to be diagnosed between the ages of 15 and 50. Lupus is not infectious or contagious.

What are the symptoms of lupus?

The symptoms of lupus include:

  • Joint and muscle pain
  • Extreme fatigue
  • Rashes over the body
  • Mouth sores

When lupus affects the nervous system, symptoms can include:

  • Mood swings
  • High fever
  • Seizure
  • Psychosis

Are you affected by lupus?

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

We support carers, friends and family too

Are you a carer for or relative of someone with lupus? 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 lupus, 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.

Volunteering at The Brain Charity Social activities

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Help with loneliness - one of Antony Gormley's 'iron men' sculptures on Crosby beach looking out to sea. The tide is out. Emotional support

Feeling lonely? Our phone befrienders can help

You can receive a regular weekly call from a volunteer befriender to combat loneliness and isolation.
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Other resources

The Brain Charity's library

The Brain Charity’s library has a range of resources on lupus and on many other related neurological conditions

Visit our library to read:

Lupus (SLE) by Arthritis Research UK Corporate, 2011

The Diagnosis of Lupus by Lupus UK, 2017

Someone you know may have Lupus by Lupus UK, 2013

or search the catalogue online here.

Support groups

Lupus UK

Lupus UK parents and carers group on Facebook.

Lupus Support UK

A UK-based lupus support group on Facebook.

Support groups at The Brain Charity

Are you interested in setting up a lupus 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

Lupus UK

Helpline: 01708 731251

Website: www.lupusuk.org.uk

Email: headoffice@lupusuk.org.uk

Hibbs Lupus Trust

Helpline: 0800 633 5118

Website: www.hibbslupustrust.org