Stiff Person Syndrome

SPS, Stiff man syndrome, Moersch-Woltman syndrome, progressive encephalomyelitis with rigidity and myoclonus (PERM)

What is Stiff Person Syndrome?

Stiff Person Syndrome is a rare neurological condition believed to affect just one to two in every one million people.

It affects the brain and spinal cord and is defined by muscle stiffness, rigidity and body spasms which can be brought on through a heightened sensitivity to stimuli such as sudden noise or light.

What causes Stiff Person Syndrome?

The cause of Stiff Person Syndrome is unknown. Research shows it may be due to an abnormal autoimmune response in the brain and spinal cord. It is also associated with other autoimmune diseases such as vitiligo. 

It is thought symptoms may be brought on by a heightened sensitivity to stimuli such as sudden noise or light.

What are the symptoms of Stiff Person Syndrome?

The symptoms of Stiff Person Syndrome include:

  • Stiff and rigid muscles 
  • Muscle and body spasms
  • Slouched posture
  • Weight loss

Are you affected by Stiff Person Syndrome?

If you’re affected by stiff-person 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 Stiff Person Syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with stiff-person 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 Stiff Person Syndrome

We support carers, friends and family too

Are you a carer for or relative of someone with Stiff Person 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 stiff-person 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.

Socialising at The Brain Charity Emotional support

Helping carers plan for the future

The Brain Charity is helping carers take care now and look to the future.
Get help
A young woman with Brain Charity lanyard shows an older man a leaflet - Information and advice services at The Brain Charity Practical help

Dealing with a new diagnosis

We can help you come to terms with a new diagnosis, practically and emotionally.
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Other resources

The Brain Charity's library

The Brain Charity’s free public library has a range of resources on Stiff Person Syndrome and on many other disability-related issues. 

Visit our library to read Neurology (Oxford Core Texts) by M. Donaghy, 2005, or search the catalogue online here.

Support groups

Stiff Person Syndrome - Official UK and Ireland support group

https://www.facebook.com/groups/SPSUK/

Other charities

Stiff Person Syndrome - UK and Ireland support group and charity 

Helpline: 01482 868881

Website: https://lizblows.wixsite.com/spsuk

Email: liz.blows@smssupportgroup.co.uk