Today's guest blog was written by Sandra C. Raymond, who is the President and Chief Executive Officer of the Lupus Foundation of America.
At the Lupus Foundation of America, the New Year is off to a busy start. Our Help Us Solve the Cruel Mystery™ National Tour is underway and we’ve reached people in cities like Washington, D.C., San Francisco, and Los Angeles who have hopped on board the 45-foot purple bus that is driving around the country on a mission to make lupus a household name.
Lupus is an autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, and a challenge to treat. It affects 1.5 million Americans, mostly young women of childbearing age. But awareness about lupus is extremely low. A recent awareness survey commissioned by the Lupus Foundation of America found that more than 60 percent of Americans have either never heard of lupus or know little to nothing about it. Awareness was even lower among some minority populations who have a higher risk for lupus, like Hispanics. The survey showed that 74 percent of Hispanics had either never heard of lupus or know little to nothing about it.
All of this makes the Help Us Solve the Cruel Mystery™ National Tour critically important. The tour is a multi-city educational program and in each city the bus stops, we hold patient and continuing medical education programs (CME) for physicians. In Los Angeles, our most recent tour stop, we had people traveling in from Las Vegas to participate. One woman said her daughter had just been diagnosed with lupus and she came because she was desperate to find help. Often, people are moved to tears after going through the bus because they have been in denial or have been feeling all alone in their struggle with the disease.
In Los Angeles, a number of our celebrity supporters also added their star power to the campaign, including Tichina Arnold, who stars in the TV Land comedy Happily Divorced and whose sister has lupus, and Ian Harding, star of the ABC Family show Pretty Little Liars, whose mother has lupus.
One of our goals with this tour is to raise awareness of lupus among Members of Congress, because research on lupus is underfunded relative to its scope and devastation. On board the bus is a petition that visitors can sign to ask Congress to fund lupus research and education services. You can also go online to sign the petition at www.cruelmystery.org.
We are excited about our bus tour because this is our most comprehensive, multi-pronged effort so far to raise lupus awareness: it takes education to the people, pushes Congress for more lupus research, and rallies people to join the fight against the disease. By the time it ends, we hope more Americans and their Members of Congress will be better educated to give lupus the attention it deserves.