Know lupus for a future with no lupus

Maggie Maloney

Hardly anyone knew that 28-year-old Monique Gore-Massy was sick on her wedding day in 2008, but just two months earlier, she had been diagnosed with lupus.

Before then, Monique had been coping with symptoms such as fever, chronic body pain, swelling of her joints, hair loss, shortness of breath and mouth sores without understanding why. First she was prescribed antibiotics and then told she was suffering from a viral infection. After nearly a year of confusion and misdiagnosis, Monique was finally diagnosed with lupus.

Unfortunately, Monique’s experience is all too common. A recent study found that a majority of people with lupus surveyed (63 percent) reported being incorrectly diagnosed. Of those reporting incorrect diagnosis, more than half of them (55 percent) said they had been to four or more different healthcare providers for their lupus symptoms before being accurately diagnosed.

Even though an estimated 1.5 million Americans have lupus, knowledge about the disease remains staggeringly limited, with nearly two-thirds of the public having little or no knowledge of lupus.  The disease is unpredictable and can damage any organ from the skin or joints to the heart or kidneys.

Despite the widespread prevalence of lupus, research on the disease has remained underfunded, relative to its scope and devastation. Only one drug has ever been developed specifically to treat lupus and approved by the US Food and Drug Administration. We must have an expanded and robust research effort in this country if we are going to one day solve the cruel mystery of lupus. We are determined to keep the pressure on Congress and our nation’s leaders to make biomedical research for lupus a national healthcare priority.

That’s why this May, Lupus Awareness Month, the Lupus Foundation of America launched the KNOW LUPUS campaign to bring greater awareness of lupus and increase support for lupus research. The campaign features a series of television public service announcements which include testimonials and statements from people with lupus and celebrity advocates. The centerpiece of the campaign is an online, animated and interactive game to test people’s knowledge of lupus and drive support for lupus research.

For people like Monique, there is no normal. Every day might bring a different challenge, a new medical complication or a new side effect from harsh medications. The Lupus Foundation of America is constantly working toward a future with NO lupus, but to achieve it everyone needs to KNOW lupus. Spread the word. Get involved and help us solve this cruel mystery.

To learn more, visit: www.lupus.org/know

Maggie Maloney is the Public Relations Director of the Lupus Foundation of America. 

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Without research, there is no hope.
The Honorable Paul G. Rogers