Lupus affects some 1.5 million people in the US, most of them women between the ages of 15 and 45. The word “lupus” is well-known, but what it actually does is less-so.
“It is an auto-immune disease, so immune system attacking self. Your immune system is supposed to be your defense against external infections and invaders and for reasons we don’t fully understand it turns on self and mounts an attack against self,” said Dr. Susan Manzi, co-founder of the Lupus Center of Excellence at West Penn Allegheny Health System.
Manzi was in Washington, DC this week launching a rebranding of the Lupus Foundation of America and a nation-wide public awareness bus tour. The new campaign centers around the phrase “Help us Solve the Cruel Mystery of Lupus,” and the bus tour will feature awareness messages on the outside and stations and kiosks inside. Manzi said the campaign is essential, as little is known about the disease.
“We have diseases that are much less common: muscular dystrophy, sickle-cell anemia, ms, that get a lot more attention and have a lot more research dollars available to them because of public awareness. This is a common disease, we need to have more research, we need people to be aware of it, we need doctors to be thinking about it,” she said.
The cause of lupus is unknown and there is no cure.
“It can be fatal, and it’s often misdiagnosed because there’s no blood test that tells you you have lupus,” said Manzi, “in terms of treating it, we do have drugs we are using to treat it, but they are very toxic drugs.”
The main goal of the upcoming bus tour is to energize the public, and ultimately Congress, to devote substantial resources to finding a cure. The bus tour will kick off this month in San Francisco and visit 16 cities throughout the US over the next year.
