World Lupus Federation Survey Shows Global Lack of Awareness, Understanding of Lupus

Results of a large-scale international survey, released by the World Lupus Federation on World Lupus Day May 10, show a low level of lupus awareness by the general public, revealing a need for increased education and understanding about the disease.

Lupus is considered to be a global health problem, with more than 5 million people estimated to have the condition worldwide.

Despite this, key findings from the survey, which included 35,506 people in 16 countries, showed that more than half the respondents were not aware that lupus is a disease. Among those who did recognize lupus as a disease, nearly half over the age of 55 did not know of any complications associated with the condition.

“This global survey and the Federation’s outreach efforts are critical to ensuring everybody understands lupus and engaging people around the world in fighting this terrible disease,” Julian Lennon, an artist and ambassador for the Lupus Foundation of America, said in a press release.

Lack of understanding contributes to stigmatization of people who live with conditions like lupus, which often leaves them isolated from family and friends. Researchers found that the misconception that lupus is contagious may contribute to some of the social stigmas the lupus community faces.

For example, only about 57 percent reported feel comfortable hugging someone with lupus, and just 49 percent said they were comfortable sharing food with someone with the disease. One in 10 respondents thought that unprotected sex might contribute to the development of lupus.

“There is a clear need to increase understanding of lupus to prevent misconceptions, tackle the stigma and help to encourage social integration for those living with the disease,” said Jeanette Anderson, a founding member of the World Lupus Federation.

Younger respondents showed more awareness of some complications of the disease than older people. About 40 percent of participants ages 18-34 were aware that kidney failure can occur because of lupus.

Researchers attributed this finding to the work that celebrities like Selena Gomez have been doing by speaking out about having the disease on social media. In September 2017, the American singer and actress opened up about having a kidney transplant.

Results also showed that 76 percent agreed more should be done to inform people about the disease and its impact, and 65 percent felt the best way to do this was by sharing more information online or through social and traditional media.

Researchers highlighted the need for increased public understanding of lupus to prevent misconceptions and stigmas associated with the disease. World Lupus Federation organization members are now looking at ways to raise global awareness and recognition of the disease and its impact.