On behalf of the World Lupus Federation Steering Committee, I want to express my sincere gratitude and congratulations to the nearly 11,000 contributors who posted social media messages on World Lupus Day. Through your efforts, more than 92 million impressions reached approximatley 52 million people around the world.
Our strategy this year was to focus on telling the story of the physical, economic, social and psychological burdens that lupus places on individuals who are living with lupus, as well as their family members and caregivers.
Once again this year, the World Lupus Federation and GSK collaborated to conduct another large-scale international survey to determine the level of public understanding about lupus and to shine a spotlight on the many misconceptions that people have about lupus. More than 35,000 people from 16 nations participated in the survey.
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Despite the fact that lupus is a global health problem, more than half (51%) of survey respondents across the world were not aware that lupus is a disease.
Of those people who indicated they were aware of lupus as a disease, 11 percent thought lupus was contagious. And only 57% were very comfortable or comfortable hugging someone with lupus. The lack of understanding of the condition is contributing to the stigmatization of lupus patients, leaving people with lupus feeling isolated.
Despite the low level of awareness and the misconceptions caused by the lack of awareness …
- almost 8 out of 10 (76%) respondents thought that more should be done to highlight and explain to the general public the impact lupus has on patients.
- 65% of respondents felt that the best way to increase awareness and understanding of lupus is by sharing more information online, on social media and via traditional media.
Observances like World Lupus Day help to increase understanding of lupus and raises the hopes of people who are living with the disease that the public will rally with them to bring more attention and resources to the fight against lupus.
The best way to end misconceptions is for people with lupus and their families and friends to raise their voices and speak out. On behalf of the World Lupus Federation, I thank everyone for their support of the 15th annual observance of World Lupus Day.
Duane Peters
World Lupus Federation Coordinator