Sjögren’s syndrome

SS, primary Sjögren's syndrome, Autoimmune disease

What is Sjögren’s syndrome?

Sjögren’s syndrome (SS) is an autoimmune disease, in which the immune system attacks the salivary and tear glands, leading to dryness of the mouth and eyes.

What causes Sjögren’s syndrome?

Sjögren’s syndrome can occur as a primary disorder (primary Sjögren’s syndrome) or secondary to another connective tissue disorder such as rheumatoid arthritis.

It usually starts in people aged 40 to 60 and is much more common in women than men.

It’s a long-term condition that can affect your daily life, but there are treatments to help relieve the symptoms.

It is not clear why the immune system stops working correctly. Some people may be born with genes that increase the likelihood of developing an autoimmune condition. Hormones such as oestrogen might go some way towards why the condition is more common in women than men.

What are the symptoms of Sjögren’s syndrome?

The two main symptoms of Sjögren’s syndrome are dry mouth and dry eyes.

Signs that your mouth is dry include needing to drink water when you eat, your tongue sticking to the roof of your mouth, hoarse voice and problems problems such as tooth decay, gum disease and mouth ulcers.

Signs that your eyes are dry includes burning or itching eyes, swollen and red eyelids, dislike of bright lights and blurred vision.

Other signs of Sjögren’s syndrome include severe tiredness and exhaustion, rashes, dry cough, joint pain, muscle pain and difficulty concentrating or remembering.

 

Are you affected by Sjögren’s syndrome?

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

We support carers, friends and family too

Are you a carer for or relative of someone with Sjögren’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 Sjögren’s syndrome, 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 Sjögren's syndrome and a wide range of other disability-related issues.

Support groups

British Sjögren's Syndrome Association (BSSA)

The BSSA has local groups throughout the country.

Support groups at The Brain Charity

Are you interested in setting up a Sjögren’s syndrome support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

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

Other charities

British Sjögren's Syndrome Association

Helpline: 0121 478 1133

Website: BBSA

 

Moorfields Eye Charity

Helpline: 020 7566 2565

Website: Moorfields Eye Charity