LUPUS UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. We presently have over 6000 Members and a number of Regional Groups around the UK who arrange medical talks, publish local newsletters, set up local occasions and organise fundraising events. LUPUS UK also produces an informative national magazine with lupus articles, letters, reports, and photographs, and operates a strong Grant Programme for research purposes and welfare. If you would like an Information Pack, it can be requested here.
So much remains to be done on behalf of people with lupus, and whether you are a lupus patient or not, your help in any way would be very much valued. LUPUS UK receives no Government or Regional funding and has to fight, alone, to progress issues across a wide range of priorities.
- to support the sufferer who may be alone and isolated.
- to provide advice and welfare support for people with lupus.
- to publish information on the disease and make literature available on lupus from other sources.
- to publish posters and publicity material, and to produce the national magazine News & Views.
- to arrange educational meetings and generally inform the medical and nursing professions on lupus.
- to publicise lupus through the Press, Radio and TV., magazine articles and all other possible outlets.
- to promote the annual October Lupus Awareness Month and awareness the year round.
- to increase the charity’s member base and income.
- to raise money for research and welfare support through national, regional and local fund-raising events.
- to affiliate with other organisations whereby the voice of LUPUS UK can reach a wider audience.
The lupus patient will need to adjust to the demands of the illness and the impact of medication. Whilst some people are severely afflicted by lupus, very many others (especially if careful for themselves) can live virtually normal lives. The aim must be to regain some quality in everyday life and the following rules may be of assistance:
- become well-educated about lupus – it’s really the only option
- offset fatigue by rest and by pacing daily activities
- try to resolve stress, depression, pain or anger
- avoid exposure to direct sunlight and fluorescent lights
- be open with family and friends on lupus unpredictability
- develop new interests and skills if wished and if able
- ask for help from family, friends and health professionals
Managing ones lupus positively can lessen the chances of flares in the illness, where lupus becomes more active and the patient feels considerably less well. Emotional factors can contribute to flares, along with concern over ability to keep in regular employment that will provide necessary income. There are times when the disease quietens or goes into a form of remission but there is no certainty in this respect and many patients are not conscious of any form of remission in their illness.
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