Hello
Since 1979 Lupus Association of NSW has been the leading peak body which offers advice, information, support and networking for patients across NSW and now also parts of Australia.
Our priorities
1. To facilitate support and provide counselling and factual up to date information for our members.
2. To promote understanding of Systemic Lupus Erythematosus (SLE) and related Connective Tissue Diseases (CTD) amongst ourselves, our families, medical and allied health professionals and the community.
3. To operate as a resource base for information and literature regarding Systemic Lupus Erythematosus and related Connective Tissue Diseases.
4. To liaise with similar organisations both interstate and overseas.
5. To promote financial support for research, training and health care services for Systemic Lupus Erythematosus and related Connective Tissue Diseases.
6. To consult with Government bodies for appropriate funding for Systemic Lupus Erythematosus and related Connective Tissue Diseases.
What is lupus?
Also known as systemic lupus erythematosus (SLE), lupus reprograms immune cells so they attack the body itself, resulting in chronic inflammation. It can affect the kidneys, joints, skin, brain, and the lining of the heart and lungs. Lupus can be mild or life-threatening.
Risk factors for developing lupus
The triggers for lupus are poorly understood. Some factors that are associated with developing lupus are:
- Being female: 90 per cent of Australians with lupus are women.
- Early adulthood: most cases of lupus are detected in people aged between 15 and 40.
- Genetic susceptibility: lupus is more prevalent in some families and some racial groups. Lupus is more prevalent and more severe in Aboriginal Australians than in the wider Australian population.
- Sunlight exposure can be a trigger in susceptible people.
Key Statistics
1 in 1,000
Lupus is estimated to affect more than 25,000 (1 in 1,000) people in Australia
15-45
Onset usually occurs between 15 and 45 years
90%
90% of those affected are women
The Latest Updates
Did you know that nearly 60% of people diagnosed with lupus will eventually develop lupus kidney disease, known as lupus nephritis?
I want to share three reasons why it’s so important:
- Lupus nephritis is a serious and life-threatening complication of lupus that can affect as many as 60% of all people with lupus, and two-thirds of children with the disease.
- Lupus nephritis is highly variable in its severity and response to therapy, with up to 30% of patients failing to respond to treatment.
- Although there have been many advances over the last several decades in the diagnosis and treatment of lupus nephritis, it remains a driving factor in increased complications, hospitalizations, and mortality rates, especially in children with lupus.
If you would like to help by joining us in the fight against lupus please considering making a donation. Every gift makes a powerful impact.
For more information follow this link Lupus and the Kidneys
World Lupus Federation – Patient Survey
This year’s is currently live and we are requesting your assistance in undertaking this survey.
The survey will focus on lupus and steroids to better understand how steroids are used as a treatment in lupus care and to raise awareness about the impact of this treatment on people with lupus worldwide.
After the survey results are analysed, they will be available to increase global awareness of lupus among the general public, policymakers and media.
The survey will close on March 18, 2024. If you are willing, please participate in this important survey.
The survey is available in 20 languages (simply choose your preferred language from the drop-down menu located in the top right corner within the survey).
We greatly thank you for your support and appreciate your assistance in encouraging people with lupus in your community to take this survey –
Some quick links to help you
Resources
Better Living
Research
Support
Show You Care
Helping Others
Raise a hand to help us
Help research to find a cure!
Join us as we work to find a cure for this hidden monster
The Lupus Association of NSW site is for informational purposes only and should not be a substitute for professional medical advice, examination, diagnosis or treatment. However, do not delay seeking or disregard medical advice based on information on this site. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. Medical information changes rapidly and while the Lupus Association of NSW make efforts to continually update the content on the site, some information may be out of date.