Last October, the Centers for Disease Control and Prevention (CDC) awarded a multimillion-dollar grant to the Lupus Foundation of America (LFA) to help promote awareness of the autoimmune disease that affects an estimated five million people worldwide.
“Although we’ve moved the needle on awareness over the years, it still remains low,” Mary Crimmings, LFA’s vice president of marketing and communication, told Patient Daily. “And it remains low with the audience most at risk for the disease -- primarily women between the ages 18 and 35.”
Women in America are between six and 10 times more likely to contract lupus than men, and five percent of children born to a parent with lupus will develop the disease during their lifetime. Lupus can manifest at any point between infancy and old age but peaks during young adulthood.
As part of its grant to raise awareness, LFA is developing a national education campaign -- targeted both at health care providers and patients at risk for the disease or those who have already been diagnosed. Additionally, LFA wants to establish new resources for those living with the disease and build communication with existing health care providers to help diagnose patients more quickly.
“It takes an average of six years and four doctors before somebody gets an accurate diagnosis,” Crimmings said.
LFA is in the process of fielding a survey of lupus patients, caregivers and diagnosing physicians in order to determine why it takes so long to find the correct diagnosis for lupus patients. Gathering information through this survey will inform programs the LFA intends to execute with its grant.
Moving forward, LFA plans to add a self-management component to its education programs to help patients suffering from lupus tend to their condition with greater independence.
The LFA's efforts to raise awareness are not limited to the grant awarded by the CDC. Each May is Lupus Awareness Month, during which time the LFA shares lupus facts on social media and encourages lupus patients to share their stories.
LFA also has a tool called Know Lupus, which is a game that teaches lupus-related facts. It is found at www.knowlupus.org.
“For somebody who is new to lupus, lupus.org has a wealth of information for individuals,” Crimmings said. “The most common questions that anybody asks are very easily available on our website.”