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.
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?
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.
1 in 1,000
Lupus is estimated to affect more than 25,000 (1 in 1,000) people in Australia
Onset usually occurs between 15 and 45 years
90% of those affected are women
Global Survey on Access to Care for People with Lupus
The World Lupus Federation (WLF) has created a survey alongside lupus organizations around the globe focusing on access to care for individuals with lupus. The survey aims to better understand challenges to access to care and lupus treatments, as well as raise global awareness of this disease.
If you are living with lupus or are a caregiver for a person diagnosed with lupus, please take this anonymous 10-minute survey, which is available in 20 languages. We will publicly share key findings from the survey leading up to World Lupus Day on May 10.
The survey closes on 3rd April 2023.
Thank you in advance for your support and for sharing your lupus experience through this important survey.
Events this Month
March is National Kidney Month, and the Day is Thursday, March 9th.
Many people with lupus develop problems with their kidneys, so this day and month of recognition are significant to us and our community. Lupus can cause a kidney disease called Lupus nephritis – inflammation in the kidneys that can make them stop working. When the kidneys aren’t working well, waste builds up in the blood and extra water builds up in the body. Lupus nephritis is most common in people ages 20 to 40. It usually starts within 5 years of your first lupus symptoms.
Help us to stimulate insight into the underlying causes of lupus and lupus nephritis and create unprecedented opportunities to reduce the need for invasive diagnostics procedures, and develop more effective therapies.
For more information take a look at our Lupus and kidneys page
Join us in participating @lupusnsw.org.au/about-us/donate/ Day of Giving on World Kidney Day.
Harmony Week – Monday 20th March to Sunday 26th March 2023
Harmony Week is the celebration that recognises our diversity and brings together Australians from all different backgrounds.
It’s about inclusiveness, respect and a sense of belonging for everyone.
To participate, you can wear orange to show your support, or you can attend/host a Harmony Week event.
Visit the Harmony Week website for more details.
You’re the reason we’re here—with information, understanding, and support that may help you live better with lupus.
Some quick links to help you
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.