The Lupus Foundation is on a Quest to Solve the Cruel Mystery of Lupus and Raise Public Awareness
Sandra C. Raymond, President and CEO of the Lupus Foundation of America
(Washington, DC, Wednesday, September 4, 2013) – The Help Us Solve the Cruel Mystery National Tour prepares to roll into Boston to educate residents about lupus, a mysterious and devastating disease that ravages different parts of the body and has no known cause or and no known cure.
The Help Us Solve the Cruel Mystery National Tour – which includes a 45-foot purple bus, will make several stops throughout Boston starting Thursday, September 5 through Saturday, September 7, 2013. The bus, open to the public for tours, will provide residents with an opportunity to learn about lupus through interactive exhibits which allow visitors to experience what it is like to live with this unpredictable disease and understand its signs and symptoms. Lupus, a disease that disproportionately affects minorities and women, is often misdiagnosed and therefore mistreated.
Of particular interest is the high economic cost of lupus. Patient care costs can exceed $21,000 per year, higher than the cost of heart disease or diabetes, and one in three patients report being temporarily disabled by lupus flares and symptoms. Despite these devastating consequences, awareness about the disease is low. Among Americans most at risk for lupus, those 18 to 34, seventy-two percent have either not heard about lupus at all or know little or nothing about the disease beyond the name, according to a recent survey. Low awareness can lead to delays in diagnosis, resulting in complications that are painful and expensive to treat.
Building awareness of lupus is essential to improving the diagnosis and treatment of lupus. Awareness is also critical to securing private and public funding for lupus research. Without sufficient funding, research studies to find the causes and cure for lupus and discover new safe, tolerable and effective lupus treatments will be delayed, and the search for a cure will be seriously impaired.
Another feature of the tour will be a patient medical education event, ‘Lupus: Learning and Living’, on Saturday, September 7, where attendees will learn from world-renowned lupus medical experts the latest research and coping and living strategies. Also on Saturday, September 7, there will also be a continuing medical education program for physicians and medical professionals. More information can be found at www.cruelmystery.org.