Take this POP Quiz to see the impact we are making together to understand the diagnosis process and improve the time to an accurate lupus diagnosis.
To better understand the challenges in diagnosing lupus, more than 1,000 people with lupus, caregivers, and health care professionals shared with us their diagnosis experiences. Thanks to their input we know that the average time to a lupus diagnosis from the time when symptoms first presented is:
A few weeks
6 or more years
Six years is far too long to wait for a diagnosis. That's why together we’re raising public awareness of the symptoms of lupus through national public awareness campaigns, as well as funding and conducting groundbreaking research to better understand the causes of lupus and find a cure.
More than half of survey participants who reported receiving an incorrect diagnosis shared that they saw ____ or more doctors before being accurately diagnosed.
Thanks to the insights from Lupus Warriors, we understand they see four or more doctors before getting a lupus diagnosis. That’s why we’re partnering with the American College of Rheumatology, the American Academy of Family Physicians, the Rheumatology Nurses Society, Medscape and others to develop programs and resources for health care professionals to help shorten the diagnosis timeline.
Thanks to our supporters, the Lupus Foundation of America funded research that contributed to the development of a new diagnostic test called:
AVISEŽ CTD is a blood test that can help doctors diagnose lupus. The test may be useful for people who have a positive antinuclear antibodies (ANA) test, or anyone concerned they may have lupus or a similar autoimmune condition.
As a result of thousands of lupus advocates working with the Lupus Foundation of America, the National Lupus Patient Registry at the US Centers for Disease Control and Prevention was established to identify who gets lupus. Through this research we learned:
Black women with lupus are diagnosed at a younger age
Black women are at a higher risk of developing lupus kidney disease compared to white women.
Lupus is about as common among American Indian and Alaska Native women as it is in African American women
All of the above
All of these research learnings from the registry provide important insights in diagnosing lupus. It has not only highlighted the disproportionate impact of lupus, but has provided evidence that the prevalence and incidence of lupus is much higher than previous estimates among these populations.
All of these could be signs of lupus. With the input from people with lupus, the Lupus Foundation of America has created a number of resources to help people navigate the diagnosis process including the Could it Be Lupus self-assessment questionnaire and video. Additionally, our national network of health educators are available to answer questions about lupus.
All of these reasons make it difficult to diagnose lupus. Working with our national network of lupus advocates and more than 40 partners, the Lupus Foundation of America educates the public on the signs and symptoms of lupus and the diagnosis process. Thanks to these efforts, awareness and understanding of lupus is increasing. This is the first step to improving time to diagnosis.
From understanding the diagnosis pathway, to educating the public about lupus, to training physicians, and supporting research that led to the development of the AVISE test to help diagnose lupus, we are taking bold steps and making a big impact to improve the lives of people living with lupus. Please consider making a donation to continue this momentum and help us solve the cruel mystery of lupus.