Stiff Person Syndrome

Stiff Man Syndrome was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has also become known as Stiff Person Syndrome. 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 depression. The onset is most frequent between the third and fourth decades of life.


Our Case

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. There are now more than 120 members in theUK and Ireland support group. Our closed Facebook group has many members from around the world and currently has over 340 in the group. Liz 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 who know about SPS to ensure any callers who present with the symptoms can tell their GPs to whom they should be referred. Another on-going task is a questionnaire for medical research to illustrate how SPS progresses over the years.


A Bit More About SPS

Women appear most likely to fall victim to SPS. The age range is wide, with some victims presenting in their 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. Classic SPS develops gradually over time and has no cure.

Some of the main front line treatments for SPS are drugs such as:
Benzodiazepines (diazepam or clonazepam);
Pregabalin (or Gabapentin);
Baclofen;
Rituximab;
IVIG;
Plasmapheresis;
medicinal cannabinoids;
Hydrotherapy;
Physiotherapy.
All of the above are available on prescription in the UK..

The newest treatment to date, which is still being trailed outside of the UK, is stem-cell therapy (SCT).
Within the UK, there are three conditions for which SCT is being trialled. Currently, SPS is not one of them.

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 GAD affects the transmission of insulin between the pancreas and the liver. In SPS, the destruction of GAD affects the transmission of nerve impulses, causing rigidity and painful spasms.

Dr Scott Newsome Explains Stiff Person Syndrome =

 

Newly diagnosed

SPS: 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 SPS.

 

Stiff Person Syndrome.

This site is 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 be of interest to caregivers, care professionals and researchers as well as advocates for the condition and the General Public.

Donations

We always welome donations, no matter how large or small. You can donate on-line or via a donations form.

To donate by secure credit card transaction, please use the button below. The full value of your donation (less credit card fees) comes to the charity.

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The group and charity was set up by Liz Blows with the following as it's aims:

(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome and their families and carers.

(2) The advancement of the education of the medical profession and the general public into Stiff Person Syndrome and its implications.

(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome and to disseminate the useful results thereof.

"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, in the modern world of PC, the condition has also become known as "Stiff Person Syndrome" (SPS). 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.