LUPUS
alias Systemic Lupus Erythematosus

Hello and welcome to the North East Lupus Group site, where you'll find details of its activities as well as more general information on the disease Lupus, the charity Lupus UK, and its various publications and factsheets

What IS "Lupus"?

• Lupus (alias Systemic Lupus Erythematosus) is an autoimmune disease where the patient's immune system creates antibodies which attack the body instead of protecting it.
  
  
• Although few people have heard of it, it is actually more common than leukaemia.
  
  
• Diagnosis is difficult, the cause is unknown, and the symptoms vary widely from one patient to another and from day to day for the same patient
  
  
• While some people are severely afflicted by Lupus, many others (especially if careful of themselves) can live virtually normal lives.
  
  
• Lupus UK is a national charity founded by Lupus sufferers (and their nearest-and-dearest) to assist those who have Lupus and those who support them.
  
  
• The North East Lupus Group was formed in 1988 to give local help in the North East of England "from Tweed to Tees".

The work of Lupus UK

• To establish and maintain a network of Regional Support Groups and Contacts throughout the UK.
  
  
• To provide welfare support for people with lupus.
  
  
• To publicise lupus through the Press, Radio and TV, magazine articles and all other possible sources.
  
  
• To publish information on the disease and make literature available on lupus from other sources.
  
  
• To provide advice and counselling to all lupus sufferers.
  
  
• To arrange educational meetings and generally inform the medical and nursing professions on lupus.
  
  
• To raise money for research and welfare support through national, regional and local fund-raising events.
  
  
• To publish a regular national magazine - "News & Views".
  
  
• To produce posters and other publicity material on lupus.
  
  
• To promote the annual Lupus Awareness Week.
  
  
• To affiliate with other organisations so that the voice of LUPUS UK can reach so many more.
  
  

Why should you join?

• If you are diagnosed with lupus, either Systemic Lupus Erythematosus (SLE) or Discoid, please consider taking up membership of LUPUS UK
  
  
• Through our books, videos, fact sheets, magazines and 30+ Regional Groups across the UK, we know we can offer you continuous and caring support.
  
  
• Alternatively, if you are a partner or friend of a lupus patient or are interested in supporting our work your membership would also be welcomed and highly valued.
  
  
• Please contact LUPUS UK for a comprehensive Information Pack
  
  

For more information on Lupus UK:

• write to the National Office at Lupus UK, St James House, Eastern Road, Romford, Essex, RM1  3NH, Great Britain
  
  
• ring 01708 731 251 (+44 1708 73 12 51 from abroad)
  
  
• fax 01708 731 252 (+44 1708 73 12 52 from abroad)
  
  

Or visit the Lupus UK website !

Since Lupus UK is a Registered Charity, it has a Constitution, which can be read here.

The North East Lupus Group is part of Lupus UK. It covers the area from Northumberland to Cleveland including parts of North Yorkshire. We hold meetings in Durham and Guisborough, and occasionally in other areas. We have a network of local contacts - people who have Lupus and are willing to talk on a one-to-one basis about any concerns you may have about Lupus. Details of meetings and contacts are given in our quarterly newsletter. Our Group Patron is Stewart F McFarlane MBE. For more information on the North East Lupus Group: Contact the Group's Secretary by email on "secret ary at north east lupus dot org dot uk" contact the Group's Chairman by email on "chair man at north east lupus dot org dot uk" For either, convert the 'at' into an '@', the dots into dots, and remove all the spaces. Also, please put 'Lupus' as the first word of the 'subject' or 'title' so we can distinguish your message from a virus! write/ring/fax Lupus UK See here for details of forthcoming North East Group meetings and events

• Lupus UK produces a range of Factsheets, booklets and articles available to its members - see list below
  
  
• And a range of "Minicards" in a variety of languages.
  
  
• It also stocks a range of reasonably-priced books and booklets.
  
  
• Here is a list of some of Lupus's most common symptoms.
  
  
• Here's some suggestions on how to cope with Lupus.
  
  
• Here's a more detailed description of the disease.
  
  
• Here's a description of the laboratory tests you may have.
  
  
• And here's the information written by Dr Hughes for issue by Lupus UK to the newly-diagnosed.

On the Internet, there is almost too much information! It ranges from medical treatises full of long words designed to impress fellow doctors, to the plain scary. Here are some sites which seem to contain a balanced range of articles. We are not qualified to comment on their relevance to your own medical problems. Ask your doctor.

• Lupus Foundation of America
  
  
• Lupus Canada
  
  
• International League of Associations for Rheumatology
  
  
• Joanne's Lupus Site
  
  
• European Lupus Foundation
  
  
• UK West Midlands Lupus Group
  
  
• UK Yorkshire Lupus Group
  
  
• The Norfolk Lupus Group
  
  
• The Polish for Lupus is TOCZEN RUMIENIOWATY UKLADOWY and a good site in that language is: www.fundacja.inweb.pl
  
  

Many of these contain numerous further links. There is also a newsgroup alt.support.lupus with a wide range of opinions, facts, gossip and outpourings. [To reach it from AOL, use the Expert Add option and type in the group's name.] It's Usenet - anyone can join in! It has produced a "Frequently Asked Questions" document to gather together those questions most often asked by those just diagnosed. (That doesn't mean they are necessarily the most important questions, though some are!) There are also several dozen links to other sites about Lupus.

Click here for the alt.support.lupus Frequently Asked Questions document

LUPUS UK acknowledges with gratitude the assistance of Dr Graham Hughes (St Thomas' Hospital, London) and Dr Caroline Gordon and colleagues (Queen Elizabeth Hospital, Birmingham) in the provision of clinical information towards the production of these fact sheets. LUPUS UK also thanks Marks & Spencer plc (Newcastle-on-Tyne and Ballymena branches) and the Wooler Walkers for their valued sponsorship towards the cost of producing the fact sheets. Note: these Fact Sheets are not intended to be read like the chapters of a book, but individually as appropriate. Some of the material is repeated on several sheets.

LUPUS fact sheets are available as follows (click the link to read the text!):

• List of titles and subheadings
• LUPUS Incidence within the Community
• LUPUS A Guide for Patients
• LUPUS The Symptoms and Diagnosis (second edition)
• LUPUS The Heart and Lungs
• LUPUS and the Brain
• LUPUS and the Kidneys
• LUPUS The Joints and Muscles
• LUPUS The Skin and Hair
• LUPUS The Mouth, Nose and Eyes
• LUPUS Fatigue and your Lifestyle
• LUPUS and Men
• LUPUS and Light Sensitivity
• LUPUS and Pregnancy
• LUPUS and Blood Disorders (second edition)
• LUPUS and Medication (second edition)
• LUPUS and Associated Conditions (second edition)
• LUPUS and the Feet
• Discoid Lupus

Lupus UK can also supply you with several books on aspects of Lupus at a reasonable price. See the Lupus UK site for the latest list. They also have "A GP's Guide to Diagnosis" and "A Guide for nurses and associated health professionals", both of which can be sent free to health professionals. [They can be purchased by anyone, although they are written in rather medical language!]

©Andy Taylor. Last updated 27 Sep 2007