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.

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

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.

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.

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.

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.

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.

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.

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.

MEDICAL AND OTHER INFORMATION FOUND THROUGH THE INTERNET MAY NOT HAVE BEEN CLEARED BY APPROPRIATELY QUALIFIED MEDICAL PERSONNEL AND SHOULD BE TREATED WITH CAUTION.

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

Val Wilson	Blackpool
Sally Wilcock	Tyldesley
Lynne Brierley	Tameside
Jackie Hall	Rossendale
Nasrin Ghayouri	Bury
Pauline Casey	Manchester
Pauline Obi	Manchester