The Impact of Lupus

Charity started in 1979, devoted to assisting with solving the mystery of lupus, one of the world’s cruellest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact We rely on donations to carry out our work With over 4,000 members and a prominent and active Board our mission is to work with people living with lupus by providing support, advocacy, education and research to find a cure this is our vision. We provide face to face patient service, library, education program, telephone, doctor’s education program CPD pointed program endorsed by Royal College of General Practitioners, counselling, support groups including rural areas for those who struggle to maintain social networks and we have developed a Paediatric Rheumatology Online Education Module Our drive is to find a cure through working with Australia’s best researchers and ongoing fundraising towards to this goal

What is Lupus? Chronic autoimmune disease in which the immune system is out of balance Lupus causes the production of autoantibodies that target “self” resulting in inflammation and tissue damage The cause is not fully understood, both genetic and environmental factors involved Develops most often between ages 15-44 Strikes women nine times more frequently than men Higher prevalence among certain racial and ethnic populations At least five million people around the world have a form of lupus; however, it is likely that many more affected

Stats In Australia 1 in 400 people have lupus (over 60,000 people) There are more people with lupus than cystic fibrosis, AIDS, cerebral palsy and multiple sclerosis combined Alarming fact - there is no cure for lupus. Most under-recognised, under-funded, chronic illness in modern times. With such prevalence and possibility of fatality, public awareness of this illness needs to improve and Lupus Association NSW is taking the lead future advocacy work.

Physical Impact Can affect any organ in the body, including the kidneys, heart, lungs, brain, skin, joints Common symptoms include pain, fatigue, fevers, skin rashes / lesions, hair loss, ulcers in nose and mouth Is unpredictable; waxes and wanes without apparent cause or warning Health effects include heart attacks, strokes, seizures, kidney failure Lupus is life changing, disabling and potentially fatal

Economic Impact Annual average total cost per person with lupus: $20,924 (1) $12,643 direct medical costs $8,659 indirect costs due to lost productivity/wages Annual costs escalate to a high of $62,651 if kidneys affected 30% of annual medical costs is related to drug treatments Two of three patients experience complete or partial loss of income due to health impact of lupus on employment (2) One in three have been temporarily disabled by the disease (2) One in four currently receiving disability payments (2) Source: (1) Clin Exp Rheumatol. 2012 Jul-Aug; 30(4 0 73): S116–S122; (2) Lupus Foundation of America Member Survey , Summer 2000 issue of Lupus Now magazine

Social Impact Percent of people indicating that lupus had a “noticeable” or “highly significant” impact on their lives is high … Social life and relationships with friends – 60% Relationship with their spouse or partner – 40% Relationship with other members of their family – 41% Activities of daily living – 72% Source: Lupus Foundation of America and UCB Pharma Survey of US and European Lupus Patients, data presented at EULAR 2009

Support Needs of People with Lupus Percent of respondents ranking the need as first of second “most important” to them: Emotional Support – 67% Empathy, concern, affection toward the person with lupus Companionship – 57% Spends time or shares interests with the person with lupus Informational – 46% Offers information, advice or guidance to the person with lupus Instrumental – 31% Help with activities of daily living such as laundry, shopping, cleaning Source: Lupus Foundation of America Needs Assessment, Alan Newman Research June 2016

Public Awareness and Support 2016 Global Survey on Lupus Awareness conducted in 16 countries with 16,000 respondents: 36% admitted they did not know lupus is a disease 51% could not identify or did not know that lupus can result in serious health complications 36% indicated they did not know any factors that may contribute to someone developing the disease. 47% feel less than ‘comfortable’ shaking hands with someone with lupus 44% feel less than ‘comfortable’ sitting next to someone on a bus who has lupus. Source: 2016 Global Lupus Awareness Survey conducted by So What Global for the World Lupus Federation’s World Lupus Day Observance, funded by GSK.

Summary Lupus has a significant impact on the quality of life for people living with the disease. The disease also has a significant economic and social impact of family members and friends. Public awareness of lupus is low, leading to many misconceptions about the disease. A global campaign to increase awareness and understanding of lupus is the key priority of the World Lupus Federation.

To Donate & Wear a Purple Ribbon Join Us in Observing World Lupus Day On May 10 Lupusnsw.org.au To Donate & Wear a Purple Ribbon Please call 02 9878 6055

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