S
Name Stiff-Person Syndrome (SPS)
Related to/Also known as
  • Stiff man syndrome
  • Moersch-Woltman syndrome
  • Progressive encephalomyelitis with rigidity and myoclonus (PERM)
Symptoms of Stiff-Person Syndrome

"Stiff person syndrome (SPS) is a very rare disease affecting only one or two people per million. It causes progressive muscle stiffness and painful spasms that can be triggered by a variety of things including sudden movement, cold temperature or unexpected loud noises."

Source: Johns Hopkins Medecine (U.S.)

"SPS does not appear to differentiate between sex, colour, or creed, although UK evidence tends to suggest women are more likely to fall victim to SPS. SPS is a neurological condition believed to be of auto-immune origin. It is unique among neurological diagnoses due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. Because of its rarity, many neurologists and GPs are not aware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression. The onset is most frequent between the third and fourth decades of life."

Source: Genetic Alliance UK

Types
  • Classic SPS
  • Focal SPS
  • Jerking SPS
Useful national contacts SPS Support Group (Stiff Person Syndrome UK and Ireland Support Group and Charity)
Tel: 01482 868881
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window https://lizblows.wixsite.com/spsuk
Children & young people "Reports of pediatric-onset stiff-man syndrome (SMS) are rare. This may be an underrecognized disorder in child neurology practice." (U.S. National Center for Biotechnolocgy Information)
Link opens in new window www.ncbi.nlm.nih.gov/pmc/articles/PMC4819072
News and Events "Diagnosed with stiff person syndrome" (Sharing Mayo Clinic News, April 2019)
Link opens in new window https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-diagnosed-with-stiff-person-syndrome
Online resources

Coronavirus - information for people with neurological problems (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/coronavirus-covid-19

Stiff Person Syndrome (NORD, U.S. National Organization for Rare Disorders)
Link opens in new window https://rarediseases.org/rare-diseases/stiff-person-syndrome

Stiff person syndrome (U.S. Genetic and Rare Diseases Information Center)
Link opens in new window https://rarediseases.info.nih.gov/diseases/5023/stiff-person-syndrome

Stiff-Person Syndrome (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page

 

 Living with a condition (The Brain Charity)

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