World Lupus Federation Urges Global Community to Raise Lupus Awareness
May 10 for World Lupus Day 2023
Donate – Lupus Association of NSW Inc. (lupusnsw.org.au)
Lupus Association of NSW Inc. – The Quest for a Cure (lupusnsw.org.au)
WASHINGTON, DC – May 8, 2023 – World Lupus Day was established to take place on May 10 by the World Lupus Federation (WLF) to unite lupus groups around the world during Lupus Awareness Month and call attention to the impact that the disease has on the more than 5 million people globally affected by lupus. This year on May 10 for World Lupus Day, the World Lupus Federation is urging the global public, including those living with lupus, their friends and family members to raise awareness and share facts about the disease on social media and in their communities.
Lupus is a chronic autoimmune disease that can cause inflammation and pain in any part of the body, including the heart, kidney, lungs, blood, joints and skin. With lupus, the immune system, the body system that usually fights infections, attacks healthy tissue. While anyone can develop lupus, 90% of people with the disease are women. It has no known causes or cure, and can be disabling and potentially fatal.
Access to care and medications continue to be a significant challenge for people with lupus around the world. A recent WLF global survey found that 1 in 4 respondents delayed or did not get medical care when needed in the last 12 months, with top reasons including wait times (44%), fatigue (22%), cost (22%). Those that delayed or did not get care also were twice as likely to have multiple flares, a time when lupus symptoms, such as pain and inflammation, worsen.
“It is an extremely important promote World Lupus Day because it is an opportunity to raise awareness of the devastating impact that lupus can have on physical, emotional and economically,” remarked Cr Barbara Ward, CE and Board member, Lupus Australia, and member of the eight-nation WLF steering committee.
In Australia and around the world, lupus isn’t understood, which can lead to delayed diagnosis and for those living with the disease to feel misunderstood and unable to receive the care they need for this debilitating disease. Each voice sharing facts on World Lupus Day can have an incredible impact and bring greater attention and resources to efforts to end lupus.
The World Lupus Federation is encouraging people around the globe to share facts about lupus and raise awareness on May 10 for World Lupus Day using the official toolkit, whether it’s by contacting local media and policymakers or through an individual’s social media channels. The toolkit offers several awareness resources and tools, including social media shareables. People across the globe are also encouraged to wear purple and have buildings lit purple to shine a light on the fight to end lupus.
Find out how to get involved on World Lupus Day at worldlupusday.org and check out the official toolkit for ways to participate and visit Lupus Association of NSW Inc. – The Quest for a Cure (lupusnsw.org.au)
About the World Lupus Federation
The World Lupus Federation (WLF) is a coalition of lupus patient organizations, united to improve the quality of life for all people affected by lupus. Through coordinated efforts among its affiliates, the Federation works to expand global initiatives that create greater awareness and understanding of lupus, provide education and services to people living with the disease and advocate on their behalf.
MEDIA CONTACT
Cr Barbara Ward
P: 02 9878 6055
Barbara.ward01@bigpond.com
Copy of above MEDIA RELEASE
On World Lupus Day – May 10, 2023
There are several ways that you can join people from all over the globe raising lupus awareness on World Lupus Day, including:
- Join the global lupus community to share your lupus story on social media, and post images of our lupus facts along with sample messages located on this toolkit webpage. Use the hashtags #WorldLupusDay and #MakeLupusVisible
- Wear your favorite purple items, and share photos on social media
- Make a statement by lighting up a building or significant landmark in your town to be illuminated in the color purple
Understanding the common signs and symptoms of lupus is critical to raising awareness and reducing the time to an accurate diagnosis.
Use the symptoms checklist to help recognize the symptoms and risk factors for lupus.
Download Symptoms Checklist
Share your story and raise the national profile of lupus by reaching out to your local media outlets with a media letter and a general lupus fact sheet.
Media Letter | Lupus Fact Sheet
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
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.
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.