Useful Links

Click on the links below to take you to various SPS and disability-related websites.

If you would like us to host or link to your SPS related Videos please contact us at admin@smssupportgroup.co.uk.

 

Worldwide Support Groups

SPS Information, Description, Definition, News Pages and Sites

  • Medscape
  • Posted Oct 28, 2011 by Practical Neurology. This is an extensive paper on SPS describing the condition, treatments and future prospects for patients.

  • Medscape
  • Last updated: Feb 6, 2012. An extensive description of the condition with references.

  • Orphanet
  • Orphanet is an information site for rare diseases.

  • Physioblasts

  • Eurordis: Rare disease news and information (Europe)

  • Wikipedia
  • Wikipedia: description of SPS.

  • ISPub
  • Article about SPS

  • Medilink

  • Medlink: Extensive description of SPS

  • Carl David Ericson
  • Carl David Ericson's page containing a description of SPS, a map of known sufferers worldwide (and growing), 4" x 4" badges and iron on logos and links to many other sites.

  • Physioblasts

  • Comprehensive overview of SPS from the Physioblasts.org site. This is a Word Document file.

  • cidpusa
  • Texas man finds diagnosis for rare autoimmune disorder.

  • Brain Journal
  • GAD measurements in disease with a mention of Stiff Person Syndrome

Research and Case Studies

 

Personal Accounts

  • One In a Million.A personal account in the form of a book. This is Jacqui Atkinson's account of her struggle with SPS. This is a remarkable story of courage, of faith, and most of all a story of love. It could help raise awareness if a sufferer wanted to help someone else see what SPS is like from someone else's point-of-view.

  • Broken Body

    Broken Body Healed Spirit.Janets journey dealing with a chronic illness and all of the emotional struggles that come with the physical illnesses.

  • David Napier.To hell and back, my journey of discovery

Information for Carers

UK Information

  • Disability Rights UK works to create a society where everyone with lived experience of disability or health conditions can participate equally as full citizens. Find everything from the RADAR NKS Key (£4.24 inc. P&P) to booklets covering : Careers, disability rights, Public transport, "If only I'd known that...", Work, computers, Money, Claiming guides for DLS/AA as well as ESA information. There are also guides on Tourism for the disabled, Caravanning, a blu badge UK roads atlas and blue badge holders. There is a small charge for all of these but well worth it for what you get.

  • Employment and support allowance overview (ESA) Disability Rights UK Factsheet F31

  • Personal Independence Payment (PIP) Personal Independence Payment - Our free guide to making a claim

  • Radar NKS Key The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations in most parts of the country.

  • Gov.UK Apply for direct payments

    Direct Payment for Care and Services. Basic information about getting direct payments money to buy in help instead of using your local council's social services if you're disabled or care for a disabled child or adult.

  • Gov.UK Getting help with everyday tasks

    You may qualify for help from your local authority, or you could explore voluntary groups in your area to see if they can provide help. A good first step is to contact your local authority to find out what help is available in your area. You can find the contact details of your local authority on the DirectGov website on the link above.

  • Gov.UK Local authority "meals on wheels"
  • This page on the DirectGov website has information on meals on wheels and how to find out more.

  • Your local Age UK group may provide "handyperson" or home help services in your community. Otherwise they might be able to give you details of other services you could use. Call 0800 169 6565 or find your local Age UK group on the link above.

  • http://www.thebraincharity.org.uk/images/joomlart/logo.png

    Supporting people with neurological conditions, their families and carers. The Brain Charity supports people with neurological conditions to live longer, healthier, more active lives.

  • Carers Trust

    Carers Trust and Crossroads Care Carers Trust and Crossroads Care provide local support from trained care support workers. You can call them on 0845 450 0350 or find your local Carers Trust and Crossroads Care provider on the link above.

  • information on employment for disabled people Information on support in employment and your employment rights.

  • Gov.UK information on disability and benefits

    Information on the benefits you may be entitled to.

  • Benefit Enquiry Line (England, Wales and Scotland)
    Freephone 0800 882 200 or textphone 0800 243 355 Provides advice and information for disabled people and carers on the range of benefits available.

  • Benefit Enquiry Line (Northern Ireland)
    Freephone 0800 220674.

UK Charity Information

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USA Information

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Technology, Equipment, Aids and Publications (UK).

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Facebook Pages

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Some Other Links to Check Out

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Accessibility Help

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  • This page describes Accessibility features in Windows XP, Windows Vista and Windows 7.

  • This page describes Accessibility features within Internet Explorer 7.

  • This page describes Accessibility features within Internet Explorer 8.

  • This page describes Accessibility features within Internet Explorer 9.

  • Firefox This page describes Accessibility features Within the Firefox Browser.

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Stiff Person Syndrome.

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.

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.

BT MyDonate  

 

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.