Global Survey
The Impact of Lupus on Organs
Lupus Association of NSW and members of the World Lupus Federation are conducting a global online survey to better understand the impact of lupus on the body’s organs, such as the skin, kidneys, heart or brain.
The findings from this survey will help to advance lupus research and provide lupus organizations around the world with important information they can use to increase global awareness of lupus.
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. Simply choose your preferred language from the drop-down menu located in the top right corner within the survey. We will publicly share key findings from the survey leading up to World Lupus Day on May 10.
As a result of this survey, we will be able to describe:
1. The impact of lupus on organ damage among survey respondents.
2. The treatment of lupus-related organ damage and challenges caused by treatment among survey respondents.
3. Related impacts of lupus-related organ damage on quality of life among survey respondents, including open ended feedback.
The survey will close on March 22, 2022 so thank you in advance for your support and for sharing your lupus experience through this important survey.
Take the survey: World Lupus Federation patient survey
On May 10, join us, the World Lupus Federation and lupus warriors around the globe as we celebrate World Lupus Day!
Did you know an estimated 5 million people worldwide have some form of lupus?
Lupus Association of NSW has played a role in uniting with other lupus groups across the world.
Help us celebrate World Lupus Day by making a donation so we can continue to support the global lupus community – we are in this fight together!
- Make a donation: Make a gift today in honor of a loved one, or someone special to you and support global efforts to end lupus.
- Raise Funds on Facebook: Start a Facebook fundraiser and invite your friends and family to help raise money for World Lupus Day.
- Spread Awareness: Lupus Awareness Month is all about educating others about lupus.
Lupus Australia
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
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
Coping and support
If you have lupus, you’re likely to have a range of painful feelings about your condition, from fear to extreme frustration. The challenges of living with lupus increase your risk of depression and related mental health problems, such as anxiety, stress and low self-esteem. Stress is a reaction to a situation where a person feels threatened or anxious. Learning healthy ways to cope and getting the right care and support can help reduce stressful feelings and symptoms.
To help you cope with lupus, try to:
Learn all you can about lupus. Write down any questions you have about lupus as they occur to you so that you can ask them at your next appointment. Ask your doctor or nurse for reputable sources of further information. The more you know about lupus, the more confident you’ll feel in your treatment choices.
Gather support among your friends and family. Talk about lupus with your friends and family and explain ways they can help out when you’re having flares. Lupus can be frustrating for your loved ones because they usually can’t see it, and you may not appear sick. Family and friends can’t tell if you’re having a good day or a bad day unless you tell them. Be open about what you’re feeling so that your loved ones know what to expect.
Take time for yourself. Cope with stress in your life by taking time for yourself. Use that time to read, meditate, listen to music or write in a journal. Find activities that calm and renew you. Self care is important, lots of sleep up to 12 hours and try not to stress keep your mind occupied.
Raise Awareness and Funds
Please follow this link to see the latest events:
Lupus Fundraising BBQ
Lemonade for Lupus
Fundraise Your Way
Plan your own fundraising event and make your mark on the lupus community.
Lupus Australia welcomes and encourages the support of individuals and companies who wish to support our mission through their own fundraising initiatives. Your fundraising event should support or enhance the image of Lupus Australia and provide an opportunity for positive exposure and increased public awareness of Lupus Australia while raising funds for those living with lupus.
For more information please email us at info@lupusaust.org.au
Together We Can Make A Difference!
Resources
Better Living
Global 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.