Stiff Person Syndrome and the Charity

"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA.  In recent years, the condition has become more widely known as "Stiff Person Syndrome" (SPS).  SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.

SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases.  Although rare, once observed it is quite unforgettable. Possibly the closest related disease is tetanus because both conditions affect peripheral inhibition via central mechanisms and both inhibit central gamma-aminobutyric acid (GABA) systems.

 

However, many neurologists and GPs are still unaware of the condition.  In many cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.

Liz Blows, who set up the UK and Ireland Support Group in 1998, began presenting symptoms in 1990 but it wasn’t until three years later that it became clear something was seriously wrong and she set off in search of a diagnosis which eventually came in 1997. She began the support group with just five members to champion the cause of this little known and misunderstood disease. She remains passionate about raising awareness in both the public and medical sectors.

Her primary role within the group, which has had charitable status since 2003, is responding to phone calls and emails, offering help, guidance and support to anyone who needs it. She is also compiling a list of neurologists world-wide who are aware of SPS to ensure any callers who present with the symptoms can tell their GPs to whom they should be referred.

 

More About SPS

Women appear most likely to fall victim to SPS. The age range is wide, with some victims presenting as babies, children and teens. However, the majority are aged 30 and over. SPS has many variants. Sadly, there are no specific tests to determine which variant a sufferer has; it can only be determined in the way the condition presents and progresses.

In simple terms, everyone has an immune system that helps ward off infections. We also have an auto-immune system which, when compromised, in effect becomes our enemy. It sees a part of our own bodies as alien and begins to destroy it.

Most sufferers appear to have at least one other auto-immune condition. The most common (approximately 48%) is insulin dependent diabetes, (IDDM). This is due to an enzyme called glutamic acid decarboxylase (GAD). Everyone has GAD, but when it is compromised by anti-bodies (which are present in both conditions), it is destroyed. In IDDM the destruction of GAD67 affects the transmission of insulin between the pancreas and the liver. In SPS, the destruction of GAD65 affects the transmission of nerve impulses, causing rigidity and painful spasms.

Newly Diagnosed?

What does it mean for me?

Stiff Person Syndrome (SPS) is complex and often unpredictable. If you have recently been diagnosed with the condition, you will, no doubt, have a number of questions about how it will affect your life. In our experience, one of the best ways of learning to adjust to your new circumstances is to have access to clear and accurate information. The aim of these pages is to do just that — to provide a practical introduction to SPS and to help you to maintain a positive attitude to managing your life with SPS.

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Copyright © 2018 Stiff Man Syndrome Charity. All rights reserved

UK Telephone: 01482 868881  

Stiff Man Syndrome UK and Ireland Support Group and Charity: Founded in 1998 by Liz Blows

Stiff Man Syndrome Support Group and Charity: Liz Blows (Chair), 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF
Stiff Man Syndrome Support Group and Charity is not-for-profit
Charity Number: 1099206

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