Results of a new global survey on lupus illustrate what persons who live with the autoimmune disease know only too well -- the condition is very poorly understood by the public at large and misconceptions of the disease abound, ranging from the belief held by more than half of international survey respondents that there are no complications associated with lupus to the suspicion that unprotected sex may contribute to development of the disease. An associated Twitter poll conducted among patient groups revealed that close to one half (47%) feel the impact of the disease on their daily life is the aspect of the condition least understood by their physicians.Click through the short slide show above for highlights of the 16-country survey which was released on World Lupus Day, May 10, 2018 by the World Lupus Fedration. Â
Lupus, Misunderstood Worldwide
Global Disease, Limited Knowledge. While lupus affects around 5 million people globablly, 51% of survey respondents were not aware that lupus is a disease. However, over 40% of respondents aged 18-34 did know that kidney failure is commonly seen in lupus.
Knowledge ≠ Understanding. Even among respondents who knew lupus is a disease, only 57% were very comfortable or comfortable hugging someone with lupus, 49% were very comfortable or comfortable sharing food with someone with lupus, and 11% believed that having unprotected sex might put them at risk of developing lupus.
Geography Matters. In the US and Brazil, greater understanding of lupus as a disease correlated with higher levels of social comfort. In Brazil, >50% are very comfortable hugging and shaking hands with someone with lupus and in the US, >70% were very comfortable/comfortable doing the same.
More Local Differences. In Japan, 28% of respondents believed unprotected sex could contribute to development of lupus. In Indonesia, 46% of people said lupus was the most common disease, but just as many thought that viral meningitis was the most common disease.
Patient Perspective Twitter Survey. In a recent Twitter poll conducted by 12 patient groups in 9 countries, a total of 2,048 votes were cast by respondents living with lupus.
Greatest Worry About Lupus. 43% of respondents living with lupus said they worried most about physical inactivity and social isolation due to the debilitating physical effects of the disease.
Which Aspects are Most Misunderstood by your Doctor. 47% of respondents said the diseases' impact on their quality of life is most misunderstood by their physician.
Are You Satisfied with Treatment/Management Through Your Doctor. 53% of respondents said yes while 47% said they were not satisfied.
