Lupus awareness low in 16-nation survey

By Richard Franki

To have lupus is to know lupus, but an international survey suggests that to not have lupus is to not know it.

“Low awareness of lupus results in public misconceptions about the disease [and] the lack of understanding contributes to the stigmatization of people with lupus, often leaving them feeling isolated from family and friends,” the World Lupus Federation (WLF) said in a statement accompanying the survey results.

Among those results: Just over half (51%) of the 35,506 respondents from 16 countries did not know that lupus is disease. Given the choices, 10% of those surveyed picked bacteria, 8% picked plant, and 3% said it was food, the WLF reported.

The top response for the question about complications associated with lupus – answered only by the 16,814 people who knew that lupus was a disease – was “I do not know” (41%), followed by kidney problems (31%), anemia (21%), heart attack (14%), blindness (11%), and psychosis (5%). The same group did better on the question about contributing factors – 53% choose defective genes and 22% picked the environment – but 11% thought the correct answer was unprotected sex, according to the survey.

Not surprisingly, understanding of lupus varied by country. Japanese respondents had the greatest awareness of kidney failure as a complication (50%), but 28% said that unprotected sex was a contributing factor. The percentage of people who thought that lupus affects the joints was highest in the United States (67%), but the majority of respondents in 12 of the 16 countries said that it affected the skin, the WLF noted.

Social isolation is a major source of worry among lupus patients, the WLF said, and the survey results supported that concern: 27% of respondents said they would be uncomfortable or very uncomfortable sharing a meal with someone who had lupus, and 20% said that they would be uncomfortable or very uncomfortable hugging someone with lupus.

“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,” said Julian Lennon, global ambassador for the Lupus Foundation of America.
The survey was conducted on behalf of GlaxoSmithKline.

Richard Franki is an associate editor with MDedge News