Lupus Foundation of America Survey: More than Half of Americans Lack Awareness, Understanding of Lupus
Reinforcing the need for Lupus Awareness Month, survey respondents lacked understanding of lupus symptoms and vastly underestimated time to diagnose lupus.
As the United States observes Lupus Awareness Month this May, a new survey commissioned by the nation’s leading voice on the disease – the Lupus Foundation of America – revealed the need for better public understanding of this cruel and mysterious autoimmune disease. While lupus affects an estimated 1.5 million people in the U.S. alone, 63% of Americans surveyed have never heard of or know little or nothing about this disease that has no cure.
Survey responses showed the biggest gaps exist around understanding the populations most at risk for the disease, lupus symptoms – and, most glaring – the prolonged time it takes to receive an accurate lupus diagnosis.
Over half of respondents (61%) believed it takes six months or less for a person to be accurately diagnosed with lupus. In reality, people with lupus have reported waiting an average of six years for an accurate diagnosis after first noticing symptoms.
Not only do many people suffer from lupus for years without knowing the cause, but there is no single test that can provide a definitive diagnosis. Yet 65% of those surveyed believed that lupus can be diagnosed with a single blood test, demonstrating that the public often doesn't understand the lengthy and frustrating process many people with lupus go through to be diagnosed.
“We urgently need to diagnose people with lupus earlier so that treatment can begin promptly, without years of delay,” said Stevan W. Gibson, Lupus Foundation of America President and CEO. “While individuals wait for their diagnosis the disease may be causing irreversible damage that will have long term implications.”
Only about a third of respondents could identify symptoms of lupus other than painful/swollen joints or extreme overwhelming fatigue. Over half did correctly identify painful or swollen joints (61%) and extreme overwhelming fatigue (58%) as symptoms of lupus.
“Awareness and understanding of lupus is one important piece of the diagnosis puzzle. Our goal is to create the change needed to shorten the path to diagnosis so individuals with lupus can lead full lives. That’s why we are committed to educating the public about lupus, training physicians to recognize symptoms, and supporting research and the development of tests to help better diagnose the disease,” said Gibson.
The survey sample was designed to be reflective of the U.S. population’s diverse demographics. Women of color are at two to three times greater risk for developing lupus than Caucasian women. However, over half of respondents (62%) didn't recognize that minority populations were disproportionately impacted by lupus.
Minority women tend to develop lupus at a younger age, experiencing more serious complications and have higher mortality rates. This was reflected among minority respondents who indicated they were also more worried about developing the disease than others surveyed: 44% compared to 29% of the sample overall.
While it was promising that a significant percentage of Hispanics and African Americans surveyed indicated they were either very familiar or somewhat familiar with lupus, including 43% of Hispanic respondents and 54% of African American respondents, there are still considerable gaps in the understanding of lupus signs and symptoms which are crucial for early diagnosis.
To address this, the Foundation has an ongoing national lupus awareness and education campaign, Be Fierce. Take Control® that aims to raise awareness of the signs and symptoms of lupus among Latino and African American women ages 18 - 25: a population at higher risk for the disease.
Lupus can strike anyone of any age. Half of those surveyed said their lives had been touched by lupus in some way – whether they were living with lupus themselves or knew a family member or friend with lupus. Because lupus affects so many lives, the public is encouraged to raise awareness of the disease and its symptoms this May, during Lupus Awareness Month. Anyone can take the pledge and spread the word.
An executive summary of the Lupus Awareness Study is on the Lupus Foundation of America website.