|
Lancashire & Cheshire Lupus Group Patron: Dr Ian Bruce MD FRCP Senior Lecturer and Consultant Rheumatologist at the Manchester Royal Infirmary |
LUPUS UK Charity No. 1051610 “Caring for people with Lupus”
|
AGM
Our AGM for 2009 will be on Sunday 15th March at the City of Manchester Stadium - home of Manchester City FC. Please come and support your Committee and make a day of it. Make a note in your diary now so you will not forget. More details will be in the Newsletter closer to the date.
Coping and Living with Lupus
"Coping and Living with Lupus" is a book that has been compiled and printed by the Lancashire & Cheshire Lupus Group. It is the first of its type. The book consists of 16 stories written by people who have lupus and also a section on Hints and Tips. The forward is by Dr Ian Bruce, our Patron. We have had 1000 copies printed. There are plenty of copies left. The book is selling for £2 per copy. If you are interested please send your cheque payable to "Lancashire & Cheshire Lupus Group" along with a self addressed C5 envelope with 55p stamp to David Price (you will find the address in the front cover of your newsletter.
Light Sensitivity
The PM has a website for protests. Below is such a petition asking the government to maintain the existence of incandescent bulbs and the governments reply. Please let me know what you think of the governments reply as it may help us in our campaign.
Righttolight - epetition reply
20 November 2007
We received a petition asking:
"We the undersigned petition the Prime Minister to maintain the availability of existing incandescent lightbulbs until there are suitable non-fluorescent energy saving bulbs which can be tolerated by everyone including people with light sensitivity."
Details of Petition:
"Health conditions which can result in severe and painful reactions to fluorescent low-energy bulbs and LEDs include lupus, ME, forms of eczema and dermatitis, XP, migraine, electrosensitivity and many more. These people will suffer increased ill health and total social exclusion if the ban on incandescent bulbs is implemented. Their home life, family life and social life will be severely disrupted and their access to employment, places of worship, cultural and educational activities will be removed. Lightbulbs are essential items of everyday use. We need to encourage technologies that promote both environmental sustainability and human health and wellbeing. This is a serious and complex issue of public health, disability rights and human rights."
Read the Government's response
The Government is working to consider how to avoid any unintended consequences, including impacts on health, from the phase out of inefficient light bulbs. The current voluntary initiative will not, in any case, remove all incandescent lighting products from the UK market, just the least efficient products. A range of specialist and more efficient incandescent bulbs will remain available on the market for the foreseeable future. The EU is currently looking to put forward legislation on inefficient incandescent lighting products, except where there are no suitable alternatives and the Government is working with the European Commission as it develops its proposals. Members of the public can be assured that the Government will consider the full range of impacts of any policy measure before it is introduced and will continue to work with stakeholders to avoid any unintended adverse impacts.
The Government are aware that there is a small number of people who claim that the use of fluorescent lights, in particular, is a problem due to either the spectrum of the emitted light or, more specifically, the amount of ultra-violet light emitted. Lighting manufacturers claim that the amount of ultra-violet light in modern compact fluorescent light bulbs is fractional in comparison to sunlight, though recommend that consumers purchase 'warm-glow' bulbs to reduce the risk of this being a problem.
Phasing out incandescent light bulbs and replacing them with efficient alternatives is a fairly simple thing everyone can do to help reduce our emissions. Phasing out such bulbs will save up to 5 million tonnes of carbon dioxide a year from electricity generation by 2011. More efficient alternatives also last up to ten times longer than normal bulbs, saving up to £60 over the lifetime of the bulb in reduced energy bills and replacement costs, which will give vulnerable groups of people, such as the fuel poor, better access to good quality light in their homes.

|
Patron Dr Ian Bruce who is the a Senior Lecturer and Consultant Rheumatologist at the Manchester Royal Infirmary
|
Hospital of Excellence
The new Rheumatology Department, Manchester Royal Infirmary was inspected by Jane Dunnage (Chair of Lupus UK), Yvonne Norton (Vice Chair of Lupus UK) and David Price (Chair of Lancashire & Cheshire Lupus Group) to see if it was suitable to become "Hospital of Excellence for Lupus". The members voted overwhelmingly in favour. Congratulations to all the staff.
The new Lupus Clinic opened for the first time on 20 April 2006.
|
![]() |
|
The opening of the "Hospital of Excellence" by the Lord Mayor of Manchester.
Contents
Welcome to the Lancashire & Cheshire Lupus Group (which includes Greater Manchester and Glossop) website. I hope you will find the website informative. Please let me have your comments via email david.price23@ntlworld.com
The Lancashire & Cheshire Lupus Group is the largest region of Lupus UK. There are approximately 2500-3000 sufferers in the region but only about 500 members. Nationally there are approximately 7,000 members. In the UK there are an estimated 50,000 patients.
The aim of this website is not to inform you about the illness but to let you know that there is an organisation in the region that you can turn to for help, support and up to date information. This webpage is for you the members. If you are organising any event that you would like published on the website then please send the information to me via email david.price23@ntlworld.com
If you are not a member then why not join.
The group is affiliated to LUPUS UK that is based at:
St James House
Eastern Road
Romford
Essex RM1 3NH
Tel: 01708 731251
Website: www.lupusuk.org.uk
The Aims of Lancashire & Cheshire Lupus Group
The Committee
The committee members are all unpaid volunteers, more than half of whom suffer with lupus. They meet 6 times a year at various locations to discuss the future e.g. Awareness Month, World Lupus Day, Medical Meetings, AGM etc.
A date for the next meeting will be announced when known. The meeting is open to any member who may wish to attend, but please let the secretary know as soon as possible, you can obtain her telephone number from the Newsletter.
|
Chairperson |
David Price |
Tameside |
|
Secretary |
Val Wilson |
Blackpool |
|
Treasurer |
Sally Nottingham |
St Annes |
|
Welfare |
Vacant |
|
|
Awareness Officer |
David Price |
Tameside |
|
Membership Secretary |
Caroline Morrison-Pinches |
Blackburn |
|
Newsletter Editor |
Pauline Casey |
Moston |
|
Fundraising |
Vacant |
|
|
Scrapbook |
Sally Wilcock |
Tydlesley |
|
Contacts/Support Rep |
Ann Thompson |
Bury |
|
Non Voting Members |
Denise Timmis |
Sale |
Contacts
These are members who are lupus sufferers that you can contact and discus your problems about lupus. If you would like to get in touch with one of the Contacts please email david.price23@ntlworld.com with your phone number and it will be passed on or you can get their telephone number from the Newsletter.
|
Val Wilson |
Blackpool |
|
Sally Wilcock |
Tyldesley |
|
Lynne Brierley |
Tameside |
|
Jackie Hall |
Rossendale |
|
Nasrin Ghayouri |
Bury |
|
Pauline Casey |
Manchester |
| Pauline Obi | Manchester |
Support Groups
These groups are where patients can meet other patients and have a good natter and compare notes over a cup of coffee or tea. To get in touch with any of the groups please email david.price23@ntlworld.com with your telephone number and it will be passed on or you can get their telephone number from the Newsletter.
The Region could do with more Support Groups. If you are interested in forming a group please let us know. A Committee Member will help a group get started.
|
Preston and District Meets on alternate months beginning January at Booths Coffee Shops in Fulwood and Penwortham at 7pm. Contact: Val Wilson |
Bury and District Contact: Ann Thompson |
|
Blackpool, Fylde and Wyre Meets on alternate months beginning January at Springfields Methodist Church Hall in Bispham at 7.15pm. Contact: Val Wilson |
North Manchester Meets at the North Manchester Hospital at 7.00pm on the first Wednesday of the month. Contact: Pauline Casey |
|
Glossop and District Meets every second Wednesday of each month at the Wren's Nest (near Tescos), Glossop at 12.30pm for lunch and a chat. Contact: Lyn Wilson email: lynwilson104@hotmail.com |
Wigan and Leigh Meets at 11.00am in Asda Coffee Bar on the third Monday of the month. Contact: Sally Wilcock |
|
Blackburn and District Meets at Blakey's on Northgate on first Wednesday of the month at 1.30pm. Contact: Pauline Bilsborough or Kathy Theaker |
Lancaster and Morecambe Group Meets once every 2 months at Canalcrafts Cafe at Galgate Contact: Val Wilson |
Membership
Through membership of LUPUS UK you can obtain:
· advice that will help you towards the diagnosis
· a comprehensive patient pack
· diagnosis criteria and comment
· access to National Contacts who are mostly patients
· support from local Groups and facilities
· books, leaflets and video lists
· advice on many aspects of lupus management
The membership fee is £8.00 p.a. (single) or £14.00 p.a. (couple)
Please send your cheque or postal order to:
LUPUS UK
St James House
Eastern Road
Romford
Essex RMl 3NH
Lupus UK will acknowledge your application and send you the relevant membership papers.
At present our regional membership is approximately 550, five years ago it was about 633. The reason for this fall in numbers is possibly two fold: (1) members have failed to renew their membership or (2) members have the information they need for carrying on with their lives and think they don't need Lupus UK anymore.
It must be pointed out that your membership is very important for the cost of research. When members leave Lupus UK it means that there is less money to be spent on research which also means it could take longer to find a cure. The amount that is spent on research depends on (a) membership, (b) donations raised by members having coffee mornings, running marathons, collections, etc. and (c) donations from industry. It must be noted that the government does not contribute one penny. Membership to other charities is much more than the £8.00 Lupus UK charge, you cannot get better value for your money than with Lupus UK.
Take care to keep your subscription up to date.
Why not arrange a Direct Debit so that it takes care of itself.
Membership renewals are due
1st January every year.
Please send all Membership fees to LUPUS UK and
all donations to the Lancashire & Cheshire Lupus Group Treasurer.
Coming Events
|
To be announced at MRI David Price will be at the new Lupus Clinic |
To be announced at Tameside Hospital David Price will be in attendance at the Lupus Clinic in Blue suite |
|
Awareness Month October 2008 |
World Lupus Day 10th May 2009 |
|
Lancashire & Cheshire Group AGM to be held on Sunday 15th March 2009 at City of Manchester Stadium Please note the date in your diary Lookout for details in the Newsletter |
LUPUS UK AGM to be held on Sunday 10th May 2009 at Stoke-on-Trent |
If you know of any Health Exhibitions Health Days that is going to happen in your area, please contact David Price (Awareness Officer) at david.price23@ntlworld.com giving dates and who to contact.
|
HAVE YOU GOT USED TO LIVING WITH LUPUS? Would you like to help other people who are new to Lupus? Are you a good listener? Could you be a telephone Contact? Training given. Contact: David Price or Val Wilson |
DO YOU WANT TO MEET OTHER PEOPLE WITH LUPUS? A trouble shared is a trouble halved. Would you like to arrange small get-togethers for people with lupus in your area? Close contact with the Committee, who will back you up where needed. Contact: David Price or Val Wilson |
Presentations
If you are a member of a Group (e.g. W.I., Women's Guild, Rotary etc.) please ask your members if they would appreciate a presentation on "Lupus and Lupus UK". If they do then ask the secretary to contact David Price.
Keeping a Diary
How often have you been to see your consultant or GP and when asked to let them know how you have been feeling since your last visit you could not find the words.
Would it not be a good idea to keep a diary? You could state what you were doing and how you felt. If you are seeing different consultants for various reasons you could highlight items pertaining to that consultant.
Physio Tips by Gemma Perkins, Physiotherapist at Royal Preston Hospital
|
DOWAGER'S HUMP? FACT POSTURE is important WHATEVER you are doing. STAND OR SIT TALL. BE VAIN! When passing a mirror, check if your head is in line with your spine. Sit up when using computer, driving, reading, writing etc. |
BONES FACT They stop developing at 25 years of age! Reach as good a level as you can before then. Children don't play out as much as they used to. Work to maintain as near that level as possible, by working the muscles that support your bones. |
MUSCLES FACT They become less active after resting for 24 hours. It takes 12 weeks to re-establish their original activity level.
Think about any muscles you don't use much. EXERCISE them gently. Keep them working. |
|
EXERCISE FACT Weight bearing exercise is simply WALKING. Nothing fancy. Set yourself a trigger for a spell of exercise. e.g. while the kettle boils, before a TV programme starts. |
BIG BUMS
FACT
Big muscles (but not fat) give good support to your hips. |
JOINT REPLACEMENT FACT Current waiting is nine months maximum. A physiotherapy programme before the operation will tone your muscles up so they will support the new joint better. |
|
JOINTS FACT Best way to keep your muscles healthy is to support the joints. Be sensible about lifting.
If a joint is inflamed only exercise gently until the pain has gone. |
EXTENDERS AND FLEXERS Think of a squeezy ball. Squeezing it is fine,
BUT afterwards open up you hand wide to extend the opposite muscles. |
BE FAIR
When you work your muscles, don't just use them one way.
Compensate by using them a different way afterwards.
Think of the squeezy ball. |
|
SLIPPING AND SLIDING
|
PILATES is to do with your core muscles Tummy and Back
Breathing and Balance.
Borrow a video or a DVD and see how it's done. Make up some "moves" to suit you. |
YOGA is Meditating and Stretching muscles to their limits.
Watch a video and work out which bits you could do.
DO NOT OVER STRETCH |
|
THE EXERCISES YOU DO |
SHOULD NOT LEAVE YOU BREATHLESS OR TIRED |
BELIEVE IT OR NOT YOU SHOULD FEEL BETTER FOR THEM |
|
AND BEST OF ALL |
RELAXATION |
LEARN ABOUT IT AND DO IT EACH DAY |
Newsletter
The editor is Pauline Casey
The Newsletter is published three times per year. It features, news from around the region, support groups, recipes, report from the treasurer, articles from various consultants from the region, what is happening in our region and letters from members. It also gives hints on how to cope with lupus.
The closing date for future editions will be 14th Feb, 14th May, 14th Aug and 14th Nov.
Send all contributions to:
Pauline Casey
7 Cobham Avenue
Moston
Manchester M40 5QW
email: CASEY_P@sky.com
Publications
|
Fact Sheets LUPUS Incidence within the Community LUPUS A Guide for Patients LUPUS The Symptoms and Diagnosis LUPUS The Heart and Lungs LUPUS and the Brain 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 LUPUS and Laboratory Tests LUPUS and Mixed Connective Tissue Disease LUPUS and Associated Conditions LUPUS and the Feet
|
5 Fact Sheets - Free of charge 6-10 £2.00 11-15 £3.00 16-20 £4.00
Please supply a stamped addressed envelope with suitable numeration |
|
Books Lupus - Your First 100 Questions (28 pages) Lupus in Children and Young People (16 pages) Lupus in Young Women (20 pages) Lupus a Guide for Patients (20 pages) Hughes Syndrome (20 pages) Lupus and the Skin (12 pages) Lupus - A GP Guide to Diagnosis (120 pages) Hughes Syndrome - A Patient's Guide (64 pages) Living with Lupus from Eleven (94 pages) Lupus - Everything You Need to Know (224 pages) Talking About Lupus (200 pages) The Challenges of Lupus (238 pages) Understanding Lupus (100 pages) The Butterfly Traveller (242 pages) Coping with Lupus (383 pages) Friendly Fire (160 pages) The Lupus Book (258 pages)
Coping and Living with Lupus |
£3.00 £3.00 £3.00 £3.00 £3.00 £3.00 £5.00 £5.00 £6.50 £7.99 £9.50 £9.50 £10.50 £12.00 £12.50 £12.50 £13.50
£2.00 |
Please add the following charges to cover postage and packing:
Up to £5.00 = £0.50 Up to £10.00 = £1.00 Up to £20.00 = £1.50 Up to £35.00 = £2.00 Over £35.00 = free of charge
(Available from David Price - please send addressed A5 envelope with 55p postage) |
Useful Links
Listed below are web sites supported by official organisations:
LUPUS UK
LUPUS UK - Medical Website
Lupus Foundation of America
St Thomas' Hospital Lupus Trust
www.lupus.org.uk www.hughes-syndrome.org
Lupus Canada
American College of Rheumatology
Arthritis Foundation of America
Hamline University, Minnesota
International League of Associations for Rheumatology (ILAR)
Lancashire/Cheshire Group
West Midlands Group
Cornwall Lupus Group
Yorkshire Lupus Group
Dorset Lupus Group
Manx Lupus Group
North East Lupus Group
Norfolk Lupus Group
AntiCoagulation Europe
The British Sjogrens Syndrome Association
MEDICAL AND OTHER INFORMATION FOUND THROUGH THE INTERNET MAY NOT HAVE BEEN CLEARED BY APPROPRIATELY QUALIFIED MEDICAL PERSONNEL AND SHOULD BE TREATED WITH CAUTION.