In a new letter, published in the Journal of the European Academy of Dermatology and Venereology, members of the lupus community underscore the critical need to recognize the unique challenges of cutaneous lupus erythematosus disease (CLE, lupus skin disease). The letter discusses findings from a 2022 survey conducted by the World Lupus Federation Global Impact (WLFGI) initiative, with data collection led by the Lupus Foundation of America – who serves as the secretariat of the World Lupus Federation. The survey highlights the significant impact of CLE on people’s lives and challenges the common perception that systemic lupus erythematosus (SLE) is more impactful.
The survey found that CLE imposes a substantial burden to those living with lupus, affecting their quality of life (QoL) in various ways. Contrary to the common perception that SLE is more burdensome, the survey findings showed that CLE often carries a higher psychological and social toll compared to SLE. Notably, 60% of respondents reported an inability to participate in social activities, 38% experienced mental health concerns, and 24% faced financial insecurity. These impacts are more pronounced in individuals with both CLE and SLE, who have 20%–80% higher odds of experiencing QoL impacts across all domains except short-term disability. The psychological and social limitations faced by people with CLE are compounded by their hesitation to pursue therapy, often due to a lack of belief in the efficacy of available treatments and the absence of CLE-specific therapies on the market.
The findings of this survey underscore the urgent need for increased awareness, improved education, and the development of CLE-specific therapies to enhance the QoL and clinical outcomes for those affected by this condition. Learn more about lupus and the skin.
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