#Lupus #Lupus Foundation #Awareness Month

Unmasking Lupus: A Call for Awareness

A recent survey commissioned by the Lupus Foundation of America (LFA) reveals startling insights into public awareness of lupus, a chronic autoimmune disease that often goes unrecognized. Despite the fact that 42% of American adults reported knowing someone diagnosed with lupus, a substantial 53% admitted they either knew very little, nothing, or had never heard of the disease at all. This gap in knowledge suggests that, although some progress has been made since 2019—when 63% of respondents knew very little or had never heard of the disease—the general awareness of lupus still lags behind many other chronic health conditions.

Lupus is characterized by the immune system mistakenly attacking healthy tissues across the body, causing inflammation and pain that can damage vital organs. Shockingly, 43% of respondents were unaware that lupus is categorized as a chronic autoimmune disease, while 44% didn’t know it could affect any organ, and over a third (38%) did not realize it could be fatal. Louise Vetter, President and CEO of the LFA, highlights this issue: “The survey reveals that lupus is still misunderstood and underestimated, with around 1.5 million Americans suffering from debilitating symptoms and having limited treatment options.”

The complexity of lupus makes it particularly challenging to diagnose. Symptoms can fluctuate frequently, often overlap with other diseases, and many are not visibly apparent, which leads to misdiagnoses or delays in receiving proper treatment. Although many respondents recognized fatigue (51%) and joint pain or swelling (46%) as common symptoms, nearly half were unaware that children could also develop lupus—a fact that is critical since around 20% of lupus cases are diagnosed in childhood, often presenting with more severe manifestations than those found in adults.

It takes an average of six years for individuals with lupus to receive an accurate diagnosis, a daunting wait filled with uncertainty and suffering. Recent advancements in lupus research have provided hope, yielding new medications and treatment techniques. However, many still rely on treatments originally intended for other conditions, such as those used for malaria and cancer. With 69% of survey respondents unaware of this treatment overlap, there exists a pressing need for broader education about lupus and its management.

Lupus Awareness Month in May serves not only as an essential reminder but also as a platform to mobilize and educate communities. The LFA plays a pivotal role in this advocacy, encouraging participation in various initiatives to raise awareness, including the National Lupus Advocacy Summit and World Lupus Day. Promotional efforts, including social media campaigns, aim to foster understanding and solidarity among those affected by lupus.

The LFA advocates for wearing purple on World Lupus Day (May 10) to show support and honor those living with lupus. Furthermore, the organization encourages sharing informative resources online to help educate the public. As Ms. Vetter emphasizes, “Awareness is the first step to a better understanding of lupus, leading to improved doctor-patient engagement and ultimately healthier lives.