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.

Lupus Clinical Trial Awareness in Australia

Help Advance Lupus Drug Development

Many people diagnosed with lupus still have symptoms despite being treated by their doctor. If you have active discoid and/or subacute cutaneous lupus erythematosus (DLE and/or SCLE), you can volunteer to take part in a research study currently enrolling adult participants.

Participants who take part in clinical studies can help pave the way to develop potential new treatments. The purpose of this study is to evaluate the safety and effectiveness of an oral study medication called BMS-986165, in people with DLE or SCLE. Even if you are taking another medication, this study may be right for you.

To learn more about the study, including eligibility requirements and where there is a site near you, please visit:

https://www.bmsstudyconnect.com/au/en/clinical-trials.html?keyword=LUPUS&keyvalue=LUPUS&location=australia&geo_lati=-25.274398&geo_long=133.775136&country&language=en&cid=v_1954941

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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.