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.