Organisations around the globe are today marking World Lupus Day, with the aim of raising awareness on this disease that affects more than five million people worldwide.

A new global federation called World Lupus Federation has just been launched in bid to elevate lupus on the international stage and deliver a global rallying cry to bring greater attention and resources to combat the disease that affects more than five million people worldwide.

As its first global initiative, the WLF has announced the results of one of the largest global surveys ever conducted, looking at awareness and attitudes about lupus among the public in 16 countries, that included Argentina, Australia, Brazil, Canada, Denmark, Finland, France, Germany, Indonesia, Italy, the UK and the US.

Key findings include:

• More than a third of respondents (36 per cent) admitted they did not know lupus is a disease.

• More than half of respondents (51 per cent) could not identify or did not know that lupus can result in serious health complications, such as kidney failure, anaemia or a heart attack.

• More than a third of respondents (36 per cent) indicated they did not know any factors that may contribute to someone developing the disease.

“When people hear that lupus is an autoimmune disease, they immediately equate it to other diseases of the immune system, like HIV and Aids,” said Susan Manzi, director of the Lupus Centre of Excellence at the Allegheny Health Network in Pittsburgh, Pennsylvania, and medical director of the Lupus Foundation of America.

Public awareness of lupus is low

“In the absence of knowledge, people mistakenly believe that lupus is a contagious disease.”

In fact, the survey revealed several social stigmas towards people living with lupus because of a misconception that lupus is contagious. For example:

• 47 per cent feel less than ‘comfortable’ shaking hands with someone with lupus, compared with 36 per cent who feel ‘very comfortable.’

• 44 per cent feel less than ‘comfortable’ sitting next to someone on a bus who has lupus.

• One in three people (31 per cent) are ‘uncomfortable’ sharing food with someone who has lupus underscoring that people strongly believe the disease is infectious.

“It is imperative that we unite lupus patient groups around the world to shine a light on the many issues affecting people living with lupus,” said Kirsten Lerstrøm, chair of Lupus-Europe and a member of the international steering committee helping to form the WLF. “Through the coordinated efforts of its affiliates, the World Lupus Federation will increase awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf.”

“Public awareness of lupus around the world is low and a range of misconceptions persist about the autoimmune disease,” said Sandra C. Raymond, president & CEO of the Lupus Foundation of America, which is serving as the secretariat for the World Lupus Federation. “Low awareness of lupus contributes to late diagnosis of the chronic and potentially life-threatening disease and places an additional boundary between people living with the incurable disease and their families, friends, and others who do not realise the many ways lupus can affect the body.”

The WLF is spearheaded by the Lupus Foundation of America and guided by an international steering committee representing five continents to ensure a coordinated effort among global lupus organisations and enhance their capacity to serve people with lupus through programmes of education, awareness and advocacy.

Individuals can help raise awareness of lupus and show their support by signing the petition to the World Health Organisation, urging them to make lupus an international health priority and ensure that people with lupus around the world are diagnosed and treated effectively.

For more information, visit the World Lupus Day website, www.worldlupusday.org.

About lupus

Lupus is a chronic autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus is mostly hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal.