A survey found that 63 percent of American respondents either had never heard of the autoimmune disease lupus, or knew little about it, the Lupus Foundation of America (LFA) announced during Lupus Awareness Month in May.
Results of the Lupus Awareness Study call for better understanding of the disorder that affects 1.5 million U.S. residents, the foundation said. Some 1,241 online respondents initially participated in the survey. Those who said they had not heard of lupus were subsequently excluded, dropping the number of participants to 1,072.
“We urgently need to diagnose people with lupus earlier so that treatment can begin promptly, without years of delay,” Stevan W. Gibson, LFA president and CEO, said in a news release. “While individuals wait for their diagnosis, the disease may be causing irreversible damage that will have long-term implications.”
Some 61 percent of respondents believed that an accurate lupus diagnosis takes up to six months. Largely because no single test is available, diagnosis actually takes an average of six years after symptom onset. However, 65 percent of participants believed that a single blood test would be able to diagnose the disorder.
About one-third of those surveyed were able to identify lupus symptoms beyond painful or swollen joints, or debilitating fatigue. Some 61 percent correctly identified painful/swollen joints and 58 percent cited overwhelming fatigue as lupus symptoms.
“Awareness and understanding of lupus is one important piece of the diagnosis puzzle,” said Gibson. “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.”
Sixty-two percent of respondents didn’t realize that the disease disproportionately affects women of color. In fact, compared with whites, ethnic minority women are at two to three times greater risk for developing the disease.
Minorities also tend to develop lupus at a younger age, and have worse complications and higher mortality rates. Among minority respondents, 44 percent said they were concerned about developing lupus. That’s compared to 29 percent of respondents overall.
About 54 percent of African-American respondents, and 43 percent of Hispanics, indicated that they were either very familiar or somewhat familiar with the disease, results the foundation views as promising. Still, the foundation said, too many people in general don’t recognize lupus symptoms, an understanding that’s essential to early diagnosis.
That’s why the foundation is underscoring its ongoing education campaign called “Be Fierce. Take Control.” The effort seeks to raise awareness particularly among latina and black women ages 18 to 25 — a demographic at higher risk for lupus.
Other survey results include:
- In general, people are more familiar with Alzheimer’s, epilepsy, Parkinson’s disease, and multiple sclerosis than they are with lupus.
- Some 71 percent accurately said it is false that lupus affects mostly men.
- Eighty-five percent recognized lupus as a serious disease.
- Twenty-eight percent falsely believed there is a cure for lupus.
- Thirty-one percent falsely thought lupus can be prevented.
- Half of respondents reported being affected by lupus.
Visit this site for an executive summary of the study.
During Lupus Awareness Month, supporters are asked to take a pledge and spread the word. Go here for Facebook profile picture frames, sample social media posts, educational shareables, and other tools to raise awareness about the disease.