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."
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