Since 2004, lupus organisations around the world have joined together on 10th May to raise awareness and educate the public about the impact of lupus for World Lupus Day.
The 2018 World Lupus Day Survey has been conducted to:
1. Assess levels of awareness and understanding of lupus across the world.
2. Highlight common misconceptions and the stigmatisation of lupus patients.
3. Support the lupus community around the official World Lupus Day campaign.
Key Survey Findings
At least five million people worldwide are believed to have a form of lupus (approximately 1 in 1,000 people in the UK). It can be a debilitating disease with symptoms affecting every aspect of the lives of those with the condition. It has no geographical boundaries, affecting people of all nationalities, ethnicities, genders and ages.
Despite the fact that lupus is a global health problem, a quarter (25%) of survey respondents in the UK were not aware that lupus is a disease. Worldwide this figure was 51%.
Out of all the lupus complications, respondents were most familiar with kidney failure as a complication of having lupus. This improved recognition may be due to celebrities like Selena Gomez speaking out and shining a spotlight on lupus. Gomez announced last September that she had a kidney transplant after lupus severely damaged her kidneys.
Of those who were aware that lupus is a disease 35% in the UK said that kidney failure was a complication of having lupus. This figure was highest (approximately 40%) in younger respondents (18-34).
Over half (51%) of UK survey respondents over the age of 55 did not know of any complications associated with lupus.
The cause of lupus is believed to be a combination of factors from both inside and outside the body, including genetics, hormones, and environment. It is not contagious or infectious.
Despite this, of those people who were aware that lupus is a disease 3% of respondents in the UK believed that unprotected sex might contribute to the development of lupus.
The lack of understanding of the condition is contributing to the stigmatisation of lupus patients, leaving people with lupus feeling isolated.
Of those people who were aware that lupus is a disease only 62% of UK respondents were very comfortable or comfortable hugging someone with lupus and only 55% were very comfortable or comfortable sharing food with someone with lupus.
It is clear that there is a need to increase understanding of lupus to prevent misconceptions, tackle the stigma and help to encourage social integration of those living with the disease.
In this survey 75% of UK respondents thought that more should be done to highlight and explain to the general public the impact lupus has on patients.
About the Survey Data
Yolo Communications conducted an online, nine-question public opinion survey for GlaxoSmithKine (GSK) and involved adults from 16 countries from across the world. The survey generated 35,506 (1,374 in the UK) respondents over the age of 18.