Welcome

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.

Make Lupus Visible

Lupus is a complex autoimmune disease affecting millions worldwide, with no known cure and often devastating impacts on daily life. Each year on May 10, communities across the globe unite for World Lupus Day to raise awareness, advocate for better care, and support those living with lupus. Led by the World Lupus Federation, this day highlights a shared global challenge.

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

Facts About Lupus

Lupus is an autoimmune disease that can affect various parts of the body. Lupus develops mostly in women between ages 15 and 44, but men, older people, and children can also have lupus.

Normally our body’s immune system produces proteins called antibodies that protect the body from foreign invaders, such as viruses and bacteria. Autoimmune means your immune system cannot tell the difference between these invaders and your body’s own cells (“auto” means “self”) and creates autoantibodies that attack and damage healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Causes of Lupus

The causes of lupus remain unknown, but scientists believe three factors may play a role: heredity, hormones, and environmental factors. No single gene or group of genes has been proven to cause lupus. Lupus does, however, appear in certain families, and certain genes have been identified as contributing to the development of lupus. Two of the environmental factors are ultraviolet rays from the sun (which can activate inflammatory cells in the skin) and certain medicines. Also, infections and stress might play roles in triggering flares in some people. Lupus is not contagious. You can’t ‘catch’ lupus or give lupus to someone else.

Diagnosing Lupus

Symptoms of lupus can vary from one person to another. The most common symptoms include joint and muscle pain, overwhelming fatigue, skin rashes, fevers, and hair loss. Some manifestations of lupus are not immediately apparent, and early diagnosis plays an important role in preventing damage to vital organs. If you think you might have lupus, you should see your doctor. There is no one test for lupus, so your doctor will need to take blood for a variety of tests. Your family health history and your own health history are also important parts of a lupus diagnosis.

Life With Lupus

Although there is no cure for lupus, early diagnosis and proper medical treatment can significantly help to control the disease. Because no two people with lupus are alike, the best treatment approach is with a health care team that will tailor treatment to your specific condition. People who are most successful at living with lupus have learned to balance their lives while living with a chronic illness. Maintain a healthy diet, get plenty of rest, avoid stress and exposure to the sun and ultraviolet light, stop smoking and drink only in moderation. Increasing numbers of research projects on lupus are under way, looking for new and improved treatments to manage lupus, and, one day, to find a cure.