World Lupus Federation Global Survey of People Living with Lupus Finds 87% Report at Least One Major Organ Affected by the Disease

10 May 2022 5:05 AM | Anonymous

Survey Findings Released in Advance of World Lupus Day on May 10

In a recent international survey, the World Lupus Federation found that 87% of the survey respondents living with lupus reported that the disease has impacted one or more major organs or organ systems. Over 6,700 people with lupus participated in the survey from over 100 countries.

Lupus is a chronic autoimmune disease that can cause inflammation and pain in any part of the body where the immune system, which usually fights infections, attacks healthy tissue instead.

Nearly three-quarters of respondents reported multiple organs impacted, with an average of three organs affected. Skin (60%) and bones (45%) were the most commonly reported organs affected by lupus, in addition to other top impacted organs and organ systems including kidneys (36%), GI/Digestive system (34%), eyes (31%) and central nervous system (26%).

“Unfortunately, people living with lupus are told that they ‘don’t look sick,’ when in reality they are battling a disease that can be attacking any organ in their body and causing countless symptoms and other serious health complications,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America which serves as the Secretariat of the World Lupus Federation. “The important work of the World Lupus Federation and its members helps to raise awareness of the challenges people with lupus face every day and brings attention to the need for more support across the globe, including from public and government leaders to increase funding of critical research, education and support services that help improve the quality of life for everyone affected by lupus.”

Among the survey respondents reporting organ impact, over half (53%) were hospitalized because of organ damage caused by lupus and 42% were told by a doctor that due to lupus they have irreversible organ damage.

The impact of lupus on the body goes beyond physical symptoms. Most respondents (89%) reported that lupus-related organ damage led to at least one significant challenge to their quality of life, such as:

  • Participation in social or recreational activities (59%)
  • Mental health problems (38%)
  • Inability to work / unemployment (33%)
  • Financial insecurity (33%)
  • Mobility or transportation challenges (33%)

“Much of the world is unfamiliar with lupus and does not understand the pain we constantly deal with or the uncertainty of what organ or part of our body lupus will attack next,” shared Juan Carlos Cahiz, Chipiona, Spain, diagnosed with lupus in 2017. “These survey findings underscore the serious impact lupus has on our lives and why more must be done to raise awareness of this disease, and advance research and care.”

Click here to view a topline summary and the detailed survey results, and join us on May 10 to help make lupus visible across the globe for World Lupus Day. The World Lupus Federation leads the annual observance of World Lupus Day to bring more considerable attention to the disease and its impact on millions of people worldwide.


Miss Jamaica World Khalia Hall to join with Government and Medical Societies to support World Lupus Day Observance


Khalia Hall, the reigning Miss Jamaica World, is demonstrating the philosophy of Beauty with a Purpose as she lends her time and influence to the cause of Lupus Awareness.

Miss Jamaica World is one of several well-known personalities that have endorsed the efforts of the Foundation over the years to promote awareness about Lupus.  “I feel grateful to be able to use my platform as Miss Jamaica World to help the Lupus Foundation of Jamaica to raise awareness around this debilitating disease.” 

On May 10, Lupus Foundation of Jamaica will be joining in with lupus groups across the world in observance of  World Lupus Day 2022 under their own theme LUPUS LEVEL UP: Make Lupus Visible.  According to Dr Desiree Tulloch-Reid, President, the campaign will have an Island wide reach through media interviews and promotions, poster displays, a social media campaign and Awareness walks dubbed “Make Strides for Lupus” across the Island and will culminate in a World Lupus Day Ceremony and mini-health fair at Emancipation Park, New Kingston, on May 10, 2022.  “We will be engaging all our members, supporters, media partners, Government, community organisations, the public at large and all our online and social media to increase awareness of lupus, specifically this year emphasising the impact of lupus on the body’s organs.”  

Ms Hall will be supporting the LUPUS LEVEL Up campaign by a video endorsement for social media and being photographed in the purple T-shirt bearing the Campaign theme.  She will also attend the Foundation’s key event, a free mini-health fair at Emancipation Park, and take part in an official Opening Ceremony at 12:00 pm in tandem with the  Minister of State in the Ministry of Health & Wellness, Hon Juliette Cuthbert-Flynn who will declare the event open.

Also present at the free event at Emacipation Park will be representatives of several health Professional Associations including Medical Association of Jamaica, Dermatology Association of Jamica, Pharmaceutical Society of Jamaica and Jamaica Physiotherapy Association as well as Mandeville Regional Hospital Nephrology Unit, who will interact with the public and provide health talks and demonstrations.  National Health Fund will provide free health screening in tandem with the Diabetes Association of Jamaica.  A live broadcast on Riddim FM 102 with host Vernon Derby will also feature conversations with health professionals, volunteers and persons living with Lupus, as well as reports from participants in awareness walks and other activities across the Island.

The public is invited to wear purple on Tuesday May 10 in solidarity, to participate in local activities and make donations to the Foundation towards support services for persons with Lupus. Further information is available at the Foundation’s website www.lupusfoundationjamaica.org or by contacting 8767548458.


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