A hand being rubbed by another hand

Understanding stiff-person syndrome

The Brain Charity’s commitment to support 

Stiff-person syndrome is an extremely rare neurological disorder, believed to affect only one to two people in every million.

At The Brain Charity, we are dedicated to raising awareness about this condition and providing comprehensive support to those affected.

What is stiff-person syndrome?

Stiff-person syndrome impacts the brain and spinal cord, leading to muscle stiffness, rigidity, and body spasms.

These symptoms can be triggered by heightened sensitivity to stimuli such as sudden noise or light. Despite its rarity, the condition profoundly affects the lives of those who have it.

Causes and symptoms of stiff-person syndrome

The exact cause of stiff-person syndrome remains unknown. Research indicates that it may result from an autoimmune response in the brain and spinal cord, which is when the immune system attacks the body.

This condition can be associated with other autoimmune conditions, such as vitiligo. It also affects about twice as many women as men, with symptoms commonly being noticed between the ages of 30-60 years old.

Common symptoms of stiff-person syndrome include:

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

Having these symptoms can also lead to anxiety and depression.

A hand in spasm

Living with stiff-person syndrome

Living with stiff-person syndrome can feel isolating and challenging, but treatment can help manage symptoms.

Treatment might be provided through medication such as muscle relaxants, as well as physical therapy and lifestyle changes.

The Brain Charity is here to help. We are the only charity in the UK dedicated to supporting individuals with over 600 different neurological conditions, including stiff-person syndrome.

Although many of these conditions are rare, they collectively affect one in six people.

Support services at The Brain Charity

Care home resident participates in a Music Makes Us! SALT through singing class from The Brain Charity in Liverpool

At The Brain Charity, we offer a range of services to support those living with stiff-person syndrome:

  • Practical help: Guidance on managing daily life with stiff-person syndrome.
  • Emotional support: Counselling, phone befriending, and group therapy to provide emotional support.
  • Social activities: Opportunities to connect with others and participate in social activities.

Our centre in Liverpool serves as a hub for individuals affected by all neurological conditions, including stiff-person syndrome, from all over the UK. We are committed to ensuring that no one faces this condition alone.

Celine Dion’s contribution to awareness

Celine Dion’s recent documentary, I Am: Celine Dion, has brought much needed attention to stiff-person syndrome.

Diagnosed with the condition in December 2022, Dion has used her platform to raise awareness and support for those affected.

Her story underscores the importance of understanding and supporting individuals with neurological conditions, especially those that are rarer and less understood.

Building a community of support

At The Brain Charity, we believe in building a strong community of support for those living with stiff-person syndrome.

Our CEO, Pippa Sargent, recently discussed the importance of support for neurological conditions in an interview with the BBC and how we can help.

“…noticing what’s different for you is really important and getting medical help… that diagnosis journey can take time, it’s important to get that help. At The Brain Charity we support people through that journey.”

Pippa Sargent in a radio studio being interviewed by the host
The Brain Charity’s CEO Pippa Sargent being interviewed on BBC radio

If you or a loved one are affected by stiff-person syndrome, remember that you are not alone. The Brain Charity is here to provide the support, understanding, and community you need. We don’t just support people with neurological conditions, we’re also here to support carers, family and friends.

For more information and support, please visit our A-Z of conditions or contact us directly. Together, we can navigate the challenges of stiff-person syndrome and build a brighter future.

Category: News

Published: 21 June 2024