North West Lupus Group
(Formely Lancashire & Cheshire Lupus Group)
Patron: Lord Doug Hoyle of Warrington
LUPUS UK
Charity No. 1051610
“Caring for people with Lupus”
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North West Lupus Group (Formely Lancashire & Cheshire Lupus Group) Patron: Lord Doug Hoyle of Warrington |
LUPUS UK Charity No. 1051610 “Caring for people with Lupus”
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BREAKING NEWS - BREAKING NEWS - BREAKING NEWS
Lupus Foundation of America Applauds FDA's Decision to Approve Benlysta®
First new treatment for lupus in more than 52 years
(Washington, DC, March 9, 2011) Today, the U.S. Food and Drug Administration (FDA) approved the drug, BENLYSTA®, for the treatment of lupus, an autoimmune disease.
Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA), has issued the following statement regarding the FDA’s decision:
“This is a historic day for the millions of people with lupus and their families around the world who have waited more than 52 years for a treatment breakthrough for lupus. We at the LFA applaud the FDA’s decision to approve BENLYSTA®. BENLYSTA is the first drug ever to be specifically developed to treat lupus, and is a significant first step toward reaching our goal of developing an arsenal of new, safe, effective, and tolerable treatments. Today marks the beginning of a new era of improved diagnosis, prevention, and treatment for the disease.
“The LFA wishes to thank the physicians, researchers, industry leaders, and the many study volunteers who made this day possible. We also extend a special thank you to BENLYSTA®’s developers, the staff of Human Genome Sciences and GlaxoSmithKline, who have long been committed to the research and development process. These efforts will go a long way in elevating the profile of this disease that remains a significant national public health problem.
“There are a number of pioneering biotechnology and pharmaceutical companies, involved in the research and development of new treatments for lupus, and our hope is that today’s decision will further stimulate additional companies to invest in new therapies for lupus. To build on this momentum and encourage the development of new treatments, the LFA has launched new initiatives that help to strengthen clinical trials. These programs include the launch of a Web-based program designed to train clinical investigators on the instruments used in trials. As well, the LFA recently implemented the LFA Lupus Research Registry which enables individuals to be notified about new clinical trials in their geographic area. The Registry is part of the LFA’s Center for Clinical Trials Education.
“The LFA also is partnering with key stakeholders from industry, government, and the scientific community to evaluate data from previous lupus clinical trials with the goal to improve the design of future studies."
SPECTRUMSPECTRUM represents LUPUS UK, Eclipse Support Group, ElectroSensitivity-UK, XP Support Group, The Skin Care Campaign, LUPUS EUROPE and Migraine Action and is supported by The National Autism Society and Right to Light.
Over the last few months I have not been in the best of health. I have been advised my my doctor and told by my family that I have to reduce my work load. I have therefore decided to step down as Co-ordinator of SPECTRUM as from 3rd November 2010. I will not be giving up any of my Lupus duties.
David Price
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 "North West 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.
Wings of Hope
Hi, my name is Tracy, I'm 29 years old and I was diagnosed with SLE nearly five years ago. My husband and I run our own business and are based from home where we live with our two children. I've been creating jewellery with my daughter for a couple of yours now and had the idea to create a jewellery range for LUPUS UK a year or so ago. I wanted to help raise much-needed funds for LUPUS UK but at the same time I wanted to increase awareness. It's taken a while to find a quality resource for our products but I feel the Sterling Silver along with the Swarovski Crystal Butterflies make for the perfect match. The beautiful Swarovski butterfly earrings and pendants really sparkle and stand out and my hope is that people will talk about the jewellery and also the disease itself.
The range consists of five earring designs and one pendant design. I wanted keep the collection simple to start with but if there's a good demand for the products then I'll look at getting even more creative.
The name "Wings of Hope" is really to help our customers relate to the difference they are making to all of us by purchasing this range. We will be donating 50% OF ALL PROFIT made from every Wings of Hope item sold this every customer will be buying a little piece of hope for all the members an sufferers of this very complex disease. Hope for the future, Hope for our children, and Hope for our families, because without Charities and Organisations like LUPUS UK many of us would feel even more isolated and alone.
We also have our 10 year old daughter's range of jewellery which is sold on the same website in a different section. She will also be donating and additional 10% of the profit from any other items sold with the Wings of Hope range. (She wanted to do her bit as well!)
The range is now online and available for purchase ensuring delivery for Christmas, however if you would like to Pre-Order you can by contacting us at: wingsofhope@oodz.co.uk and telling us which item/colour/quantity you require. This will help us to ensure nobody is let down by lack of stock.
You can see the full range by logging onto www.oodz.co.uk . Telephone orders can be taken on 07830 149592 or 07830 149593.
Please help us help others to make a difference.
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Patron
On Sunday 10th April 2011 Lord Doug Hoyle of Warrington became our new Patron. Prof Ian Bruce retired as Patron after 5 years.
Lord Hoyle prefers to be called Doug. He served as an MP from 1964 to 1997 representing Nelson and Colne, Warrington and Warrington North. He was elevated to the House of Lords in 1997. In his spare time he is President of the Adlington Cricket Club and is also President of the Warrington Wolves Rugby League Football Club. The motto of the Warrington Wolves is "Lupus non Mordet Lupum" which I believe means "A wolf does not bite a wolf" meaning they support each other and work as a team. It is hoped with the help of Doug to form a close bond with the Club.
He has agreed to become a member of the All Party Parliamentary Group (APPG) for Lupus if an when it is reformed. The APPG for Lupus is a group of MPs and Peers who have an interest in Lupus. They meet a few times each year and they have guest speakers on the subject so it is their way of keeping up to date. They even lobby the necessary government.
Lord Hoyle has also agreed to help promote Lupus where he can.
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Contents
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Welcome to the North West Lupus Group (which covers Lancashire, Cheshire, Greater Manchester, Merseyside, Cumbria and the SK postcode of Derbyshire). I hope you will find the website informative. Please let me have your comments via email david.price23@ntlworld.com
The North West Lupus Group is the largest region of Lupus UK. There are approximately 2500-3000 sufferers in the region but only about 644 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 the North West Lupus Group
The Committee
The committee members are all unpaid volunteers, only one does not 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/Information Day 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.
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Chairperson/Awareness Officer/Trustee |
David Price |
Tameside |
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Secretary/Newsletter Secretary/ Membership Secretary |
Val Wilson |
Blackpool |
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Treasurer/Facebook |
Elaine Holland |
Stockport |
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Welfare |
Vacant |
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Fundraising |
Vacant |
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Scrapbook/Booking Secretary |
Sally Wilcock |
Tydlesley |
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Contacts/Support Rep |
Ann Thompson |
Bury |
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Elaine Holland |
Stockport |
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Committee Member |
Caroline Morrison-Pinches |
Blackburn |
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Committee Member |
Carol Lord |
Bury |
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Non Voting Member |
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 you can get their telephone number from the Newsletter.
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Val Wilson |
Blackpool |
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Sally Wilcock |
Tyldesley |
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Lynne Brierley |
Tameside |
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Jackie Hall |
Rossendale |
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Nasrin Ghayouri |
Bury |
| Caroline Morrison-Pinches | Blackburn |
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.
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Preston and District Meets on alternate months beginning January at Booths Coffee Shops in Fulwood and Penwortham at 1.45pm. Contact: Val Wilson |
Bury and District Meets at the Fusiliers Museum Coffee Shop, Bury Contact: Carol Lord |
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Blackpool, Fylde and Wyre Meets at "The Squirrel" Bispham Road Contact: Val Wilson |
North Manchester General Hospital Meets at the Outpatients A at the Hospital Contact: Lorraine Ward |
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Blackburn Meets at Blakey's in King George's Hall Contact: Caroline Morrison-Pincher or Kathy Theaker |
Wigan and Leigh Contact: Sally Wilcock |
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Merseyside If any member would like to start a Support Group then please contact either Val Wilson or David Price |
Lancaster and District Meets at Ashton Garden Centre, Lancaster Contact: Val Wilson |
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Northern Moor and Stockport Temporarily inactive due to health reasons Contact: Gwen Forde |
Crewe and District Meets at "The Coach and Horses" 7.30pm on the 2nd Monday of the month. Contact: Christine Smith |
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South Cumbria They meet at several locations Contact: Kathy Fare |
Southport This is a new group planning to meet monthly Contact: Val Wilson |
There is an opportunity to start up daytime support groups in The Lever Chambers, Bolton and at Warrington Hospital. If you are interested then please 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 £10.00 p.a.
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 the last count the Group had 654 members. The recent increase is due to the fact that National Office has asked us to take Cumbria members under our wing as they do not have any committee. I would like to take this opportunity to welcome them to our group.
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 £10.00 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.
Membership from 1st January 2011 is £10.00
Please send all Membership fees to LUPUS UK and
all donations to the North West Lupus Group Treasurer.
Coming Events
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Awareness Month October 2011 |
World Lupus Day 10th May 2012 |
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North West Lupus Group Annual Information Day date and venue to be announced at a later date |
LUPUS UK AGM to be held in May 2012 Cardiff |
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.
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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
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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. |
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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. |
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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. |
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SLIPPING AND SLIDING
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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 |
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THE EXERCISES YOU DO |
SHOULD NOT LEAVE YOU BREATHLESS OR TIRED |
BELIEVE IT OR NOT YOU SHOULD FEEL BETTER FOR THEM |
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AND BEST OF ALL |
RELAXATION |
LEARN ABOUT IT AND DO IT EACH DAY |
Newsletter
The editor position is vacant - if you would like the position then please contact either David Price or Val Wilson
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: Val Wilson
Publications
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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
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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 |
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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 = £0.75 Up to £10.00 = £1.25 Up to £25.00 = £2.00 Up to £50.00 = £2.50 Over £50.00 = free (OK orders only)
(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)
North West Lupus 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.
