New data highlights urgent need for improved education and diagnosis of lupus nephritis (lupus-related kidney disease), a serious complication of lupus
WASHINGTON, May 6, 2025 /PRNewswire/ -- A global survey conducted by the World Lupus Federation reveals that 47% of people living with lupus report kidney involvement, which leads to a critical and under-recognized complication known as lupus nephritis (lupus-related kidney disease). More than 43% of respondents reported having little or no knowledge about lupus nephritis, however, 85% of respondents also reported experiencing one or more symptoms associated with lupus nephritis. The survey findings underscore significant gaps in the understanding, diagnosis, and treatment of lupus nephritis, a potentially life-threatening condition that disproportionately affects people during their most active years of life.
Lupus nephritis occurs when the immune system mistakenly attacks the kidneys, leading to inflammation and possibly to long-term organ damage, including kidney failure, if left untreated. Although most cases of lupus nephritis begin within five years of a lupus diagnosis, nearly one in five survey respondents who self-report having symptoms of kidney involvement have not been told by a doctor they have lupus nephritis.
In its early stages, the symptoms of lupus nephritis can go unnoticed. More than half of the respondents reported little or no knowledge of common symptoms of lupus nephritis (53%), when it is important to be screened (54%), and what tests are done to screen for lupus nephritis (57%). Symptoms of lupus nephritis include fluid retention leading to weight gain, swelling, an increase in urination (especially at night), blood in the urine, foamy appearance of the urine, and high blood pressure.
"These findings reveal a troubling reality-many people with lupus are living with kidney complications they don't fully understand or even know they have," said Louise Vetter, President & CEO of the Lupus Foundation of America. "Early diagnosis and access to appropriate treatment are essential for protecting kidney health and preventing long-term damage. We must act urgently to close these knowledge gaps and improve education of common symptoms and proper monitoring of the kidneys, in addition to improved care across the globe. As we recognize World Lupus Day on May 10, this is a moment to rally together, raise our voices, and fight for better outcomes for everyone living with lupus."
Additional key findings include:
- 74% of survey respondents who stated that their kidneys were not impacted by lupus reported one or more common symptoms of lupus nephritis, with an average of 1.5 symptoms.
- 3 in 10 respondents with lupus nephritis reported little or no knowledge of the condition.
- 59% of those with lupus nephritis reported having been hospitalized because of it.
- More than one third (36%) of those reporting a lupus nephritis diagnosis have not had a kidney biopsy-the gold standard for diagnosing lupus nephritis.
- Of those with lupus nephritis who have not had a kidney biopsy, 54% of them reported they were hesitant to have the procedure.
More than 3,260 people with lupus from 84 countries completed the 25-question survey administered in March 2025. The World Lupus Federation is releasing these survey results in the lead-up to World Lupus Day on May 10 to spotlight the urgent need for greater awareness, education, improved screening, and timely treatment of lupus and lupus nephritis.
The World Lupus Federation urges individuals, organizations, and healthcare providers worldwide to use this data to inform lupus education and awareness efforts, and to share facts about lupus, including from this survey, and raise awareness using the official World Lupus Day Toolkit.
For further survey details, view the topline visual summary and detailed survey results.
About the World Lupus Federation:
The World Lupus Federation (WLF) is a coalition of more than 200 lupus patient organizations, united to improve the quality of life for the approximately 5 million people around the world who are affected by lupus. Through coordinated efforts among its members, the Federation works to expand global initiatives that create greater awareness and understanding of lupus, provide education and services to people living with the disease and advocate on their behalf. The Lupus Foundation of America (LFA) co-founded the WLF with Lupus Europe in 2015 and the LFA currently serves as the Secretariat of the Federation.
MEDIA CONTACT
Mike Donnelly
World Lupus Federation
donnelly@lupus.org
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