UCL Queen Square Institute of Neurology


Stiff-person Syndrome

NLM Medline definition of stiff-person syndrome: A condition characterized by persistent spasms (SPASM) involving multiple muscles, primarily in the lower limbs and trunk. The illness tends to occur in the fourth to sixth decade of life, presenting with intermittent spasms that become continuous. Minor sensory stimuli, such as noise and light touch, precipitate severe spasms. Spasms do not occur during sleep and only rarely involve cranial muscles.  Respiration may become impaired in advance cases.

Stiff-person Syndrome: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site)

Stiff Person Syndrome: information from NORD, the National Organization for Rare Disorders (US site)

Pubmed Medline search on stiff-person syndrome

Support groups

The aims of Neurosupport are to provide advice, information and support to people with a neurological condition, their families and care professionals, and to raise the awareness of neurological conditions in the community at large.

Stiff Person Syndrome Support Group and Charity for the UK and Ireland
This charity is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may also be of interest to caregivers, care professionals, researchers (together with advocates for the condition) and the general public.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.