New Survey Reveals Serious Misconceptions about Lupus in UK Public

New Survey Reveals Serious Misconceptions about Lupus in UK Public

Today LUPUS UK announces the UK findings from of one of the largest global surveys ever conducted looking at awareness of lupus among the general public in 16 countries.

“This survey has demonstrated how low public awareness of lupus is in the UK and has highlighted that a range of misconceptions persist about the autoimmune disease,” said Chris Maker, Director of LUPUS UK.  “Low awareness of lupus contributes to the significant delays in diagnosis that we observe of this chronic and potentially life-threatening disease – an average of 7.5 years from the onset of symptoms. It also places an additional boundary between people living with the incurable disease and their families, friends, and others who do not realise the many ways lupus can affect a person.”

Key findings in the UK include:

  • More than a quarter of respondents (26%) admitted they did not know lupus is a disease.
  • More than half of respondents (51%) could not identify or did not know that lupus can result in serious health complications, such as kidney failure, anaemia or a heart attack.
  • More than a third of respondents (42%) indicated they did not know any factors that may contribute to someone developing the disease.


The survey revealed several social stigmas toward people living with lupus because of a misconception that lupus is contagious.  For example:

  • 41% feel less than ‘comfortable’ shaking hands with someone with lupus.
  • 38% feel less than ‘comfortable’ sitting next to someone on a bus who has lupus.
  • 1 in 5 people (22%) are ‘uncomfortable’ sharing food with someone who has lupus underscoring that people strongly believe the disease is infectious. 15% of respondents are ‘uncomfortable’ hugging someone with lupus, with 7% of those respondents feeling ‘most uncomfortable.’


To view the full findings from the survey, please click HERE.

“When people hear that lupus is an autoimmune disease, they immediately equate it to other diseases of the immune system, like HIV and AIDS,” said Chris Maker, Director of LUPUS UK.  “In the absence of knowledge, people mistakenly believe that lupus is a contagious disease.”

Raising awareness of lupus is a key objective of LUPUS UK which is a member of the newly formed World Lupus Federation (WLF). As its first global initiative, the WLF is leading nearly 200 lupus patient groups in the annual observance of World Lupus Day on May 10th with the objective of making lupus a priority with the World Health Organisation.


About the Survey
The Survey was conducted by GSK and the results were shared as part of GSK’s ongoing efforts to assist the World Lupus Federation to raise global awareness of lupus.  The online, six-question survey was carried out under subcontract by Yolo Communications, an international market research and social media insight agency between March 24th and April 8th 2016. The survey involved 16,911 adults 18+ from 16 nations: Argentina, Australia, Brazil, Canada, Denmark, Finland, France, Germany, Indonesia, Italy, Japan, Spain, South Korea, Switzerland, UK and USA (minimum of 1,000 respondents from each nation).

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