Lupus Unknown by Majority of Americans, Despite Widespread Prevalence

New Lupus Foundation of America survey shines a light on cruel and mysterious disease
 during Lupus Awareness Month

WASHINGTON, May 1, 2025 /PRNewswire/ -- A new survey commissioned by the Lupus Foundation of America (LFA) for Lupus Awareness Month in May, reveals that lupus remains mostly unknown and misunderstood, despite its widespread prevalence. Although 42% of American adults reported that they personally knew someone living with the disease, 53% said that they knew very little, nothing, or had not heard of lupus. While these findings show some progress compared to the LFA's 2019 Lupus Awareness Survey, which showed 63% of Americans had never heard of or know little or nothing about lupus, awareness of lupus still lags behind that of other chronic conditions.

Lupus is a chronic autoimmune disease where the immune system attacks healthy tissue in various parts of the body and leads to inflammation, pain, and can damage any organ. Four in 10 (43%) respondents said they did not know lupus is a chronic autoimmune disease, 44% indicated they did not know lupus can impact any organ in the body, and more than one-third (38%) were not aware that lupus can be fatal.

"The survey is a sobering reminder that lupus remains a misunderstood and underestimated chronic condition," said Louise Vetter, President & CEO of the Lupus Foundation of America. "An estimated 1.5 million Americans are living with lupus, suffering painful and debilitating symptoms with only limited treatment options and devastating consequences. Lupus Awareness Month is a call to action because we know that awareness is the first step toward deeper understanding, stronger doctor-patient engagement, and healthier lives."

The journey to a lupus diagnosis can be long and arduous. Numerous lupus symptoms are not visible, can come and go and change over time, and overlap with other diseases, leading to frequent underdiagnosis and/or misdiagnosis. Many survey respondents were aware of two of the most common symptoms of lupus, fatigue (51%) and painful or swollen joints (46%). However, while lupus primarily impacts women ages 15-44, nearly half of Americans (40%) said they did not know that children can also develop the disease. Up to 20% of people with lupus are diagnosed as children, and pediatric onset of the disease tends to be more severe and aggressive than in adults.

"On average, it takes six years for someone suffering from lupus symptoms to receive an appropriate diagnosis," added Ms. Vetter. "In recent years, we've seen remarkable progress in lupus research and care – from breakthrough medications and emerging cell therapies to improved clinical practices – but we must increase community and clinical understanding of lupus so that more people live healthier lives with lupus."

While there has been significant progress in the development of lupus-specific treatments in the last five years, often non-lupus medications are used to manage symptoms and disease progression. As a result, people often suffer with significant side effects in an effort to maintain quality of life. Awareness of this is low, with 69% of survey respondents saying they were not aware that medications used to treat malaria or cancer, such as chemotherapy, are also being used to treat lupus.

The recent survey underscores the importance of Lupus Awareness Month. The Lupus Foundation of America is the leading source for information on lupus and serves as the convener of Lupus Awareness Month. In addition to educational outreach to improve the understanding of lupus, May is a time to uplift those living with lupus, fuel research progress, and spark action and advocacy in every community. This May, the Lupus Foundation of America's Make Lupus Visible campaign includes many new ways to participate –

• LFA's National Lupus Advocacy Summit on May 5-6
• Virtual Advocacy Day on May 6
• World Lupus Day on May 10 with a call to action to wear purple and encourage social media advocacy
• Use the hashtags #WorldLupusDay and #LupusAwarenessMonth to post lupus facts along with graphics, resources and sample messages located in the Lupus Foundation of America's awareness toolkit.

For more information on Lupus Awareness Month and how to get involved, visit www.lupus.org/lupusawarenessmonth. An executive summary of the 2025 survey is available here.

About the Lupus Foundation of America
The Lupus Foundation of America is the national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus.

About Lupus
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, hits out of nowhere, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive, and can be fatal, yet research on lupus remains underfunded relative to its scope and devastation.

Contact:
Shannon Brown
Lupus Foundation of America
(202) 763-5485
brown@lupus.org

SOURCE Lupus Foundation of America, Inc.