Donations are flooding in for a once active mum of three who hopes to raise enough money for a life-saving operation, after living with a one-in-a-million condition that has left her bed-bound
Lindsey, who is known to many as Nerri, has a wish, and that is to have the gift of time, the chance to live. She has had many successes with her illness. The doctors are now running out of ideas and resources. Follow her blog on the following link:
Brave Scottish Sufferer Featured in Daily Express
Yet another SPS victim is featured in a national newspaper, further raising awareness of the condition. You can read all about 70-year-old Vivian Murphy’s story.
The Pen is Mightier than the Sword: New Book about SPS
SPS sufferer Jac Atkinson, full name Jacqui Atkinson, is now a fully fledged, published author. Jac has toiled for a number of years writing a book that features her struggle with SPS. It has now been released and is available on Amazon. This unique perspective is yet another weapon in our awareness-raising arsenal for our little known and often misunderstood (and mis-diagnosed) condition. Find the book on Amazon by searching for "One in a Million by Jacqui Atkinson." In Britain it is at: Amazon..
Golf News: Renewed Sponsorship of Major Tournament in 2014
In our on-going campaign to raise awareness, the Charity has once again agreed to sponsor, for the third year running, Beverley Golf Club's premier competition, the Order of Merit for 2014 (pictured below are charity founder Liz Blows and 2013 golf club captain Paul Atkinson). In the inaugural year, more than 160 golfers took part in the season-long tournament which netted the charity £458. Last year, a similar number of players took part but contributed even more (just over £500) to the coffers. The tournament begins in April and runs through to October with a total of 38 events at the East Yorkshire Westwood club. You can read about the 2013 event and the 2012 competition on the Order of Merit Golf Tournament Page
Video records of SPS/SMS-related topics are now online to show the world how the condition affects sufferers. Click here.
The Videos are also accessible from the "Links" menu.
If you would like us to host or link to your SPS related Videos please contact us at email@example.com.
Welcome to your refreshed and invigorated new-look SPS Support Group website. Presentation, content and navigation have been significantly improved to enhance the user experience. The site is very much a work in progress - keep checking in the coming months to see what's new, different or simply given a new lease of life. If you have any ideas, views or comments, we'd love to hear them. After all, this site is about, and for, YOU.
Apart from the ever-evolving look and feel of the site, we have further boosted our reach by the creation of a discussion Forum and, most recently, the addition of our very own Facebook page, together with a number of other innovations to help us keep pace in the ever-changing modern world. Please find time to fully explore our website and discover all it has to offer in the never-ending campaign to raise awareness of SPS at home and around the world.
Membership of the group is restricted to UK and Ireland residents only, although we’re always pleased to hear from fellow sufferers, their families and carers around the world (see Links) and our presence on Facebook means we are within reach of everyone in the global community.
You can email us, ’phone on the dedicated SPS Support Group telephone number or click the ’phone link to use Skype, and also find us on Facebook
Why not add our "SPS UK & Ireland" badge to your Facebook Picture from here:
If you have any technical issues with this site please eMail here
This site 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 be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"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 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. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.