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By Linda Barlow  |  May 14, 2015

“It’s Lupus”: The Words No Woman Wants to Hear

They’re in the prime of their lives: young women who are finishing college, getting married, starting careers and families. Then comes the devastating diagnosis: systemic lupus erythematosus (SLE), otherwise known as lupus.

Linda Barlow

Linda Barlow

One and a half million Americans are afflicted with lupus, but the disease occurs 10 times more in women than in men and typically strikes when women are between the ages of 15 and 44. Lupus is the leading cause of kidney disease, cardiovascular disease and stroke among young women. Women of color are two to three times more at risk for lupus than Caucasians and are more likely to have disease that is severe.

Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body; it is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack.

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A note from our sponsor:  If you or someone you know is living with lupus and struggling to afford the treatments, the HealthWell Foundation may be able to help.  Click here to visit HealthWell’s eligibility page.

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While many people may have heard of lupus, research shows that two-thirds of the public know little or nothing about the disease, and medical research has remained underfunded relative to its scope and devastation.

Lupus Awareness Month was established to provide people around the world the opportunity to unite and raise awareness of the disease. Several patient advocacy groups are recognizing May as Lupus Awareness Month with a variety of activities and outreach programs. We highlight two of them here.

To draw attention to the devastating effects of lupus in women in their twenties — the decade in which lupus is most often diagnosed — the Lupus Research Institute unveiled “Window on Lupus 2020,” a larger-than-life window display at New York City’s Rockefeller Plaza. Seen by about 250,000 people daily, the window display urges young women to talk with their healthcare professional if they have common symptoms of lupus such as persistent fatigue and fevers, swollen joints and/or skin rash.

“Twenty is the age when the future beckons with the brightest promise,” said Margaret Dowd, LRI President and CEO in a statement to the media. “But for many young women diagnosed with lupus, the future can hold the threat of serious consequences — the potential for a stroke, a heart attack, and kidney disease. We want people with lupus to know that there is hope in their future as we work to achieve our 2020 milestone to help prevent organ damage and progression.”

The Lupus Foundation of America is another patient advocacy group working to increase awareness of the disease. The Foundation launched a multi-media campaign this month called “KNOW LUPUS.” The campaign features a series of television public service announcements (PSAs), which include a collection of testimonials and statements from people living with lupus, along with celebrity advocates including Whoopi Goldberg, Tim Gunn and Susan Lucci.

The PSAs encourage people to play an online game that engages them to KNOW LUPUS and make a donation to lupus research.

“The goal of the KNOW LUPUS campaign is to bring greater awareness of lupus and raise funds for lupus research by engaging support from corporations, media, celebrities and community partners,” said Sandra C. Raymond, President and CEO, Lupus Foundation of America. “Everyone needs to KNOW LUPUS to create a future with NO LUPUS.”

Are you or is someone you know suffering from lupus? What are you doing to help spread the word about this disease, especially among young women? Let us know in the comments.

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