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Tag Archives: Lupus Awareness Month

“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.


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.


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.

Patient of the Month: Sharon Harris Survives Lupus and Pays It Forward

Sharon Harris remembers February of 2002. She remembers where she was, what she was wearing, and what she was feeling. Most of all, she remembers the day she was diagnosed with lupus.


Sharon Harris, lupus awareness advocate and founder of Lupus Detroit

May is Lupus Awareness Month. Lupus is a chronic inflammatory disease that occurs when the body’s immune system is unable to distinguish between foreign illnesses and the body’s own tissue and organs. Inflammation caused by lupus can affect joints, skin, kidneys, blood cells, brain, heart, lungs, and other organs. Although there is no cure for lupus, there are numerous medications that can alleviate its symptoms.

Sharon had just graduated from Florida A&M University in Tallahassee when she received her diagnosis. “I was 22 at the time, fresh out of college,” Sharon said. “You’re taught while you’re growing up to learn your manners, respect your elders, and get a good education. No one tells you about an autoimmune disease that you will have for the rest of your life.”

Nor had anyone told her what having lupus would entail. “I immediately went into battle mode,” she said. “I had graduated from college. I had traveled 1200 miles from my family to make my journalism degree happen, and I was going to fight.”

“But, as soon as I got my fight on, that’s when all the pain started.”

Sharon experienced a flare-up of symptoms. It would be an understatement to say that the rest of that winter was difficult for her. Her hair began to fall out. She suffered from constant fatigue and pain. In the month of February alone, Sharon lost thirty pounds.

After beginning treatment on several different medications, Sharon started feeling better by that summer. One Wednesday during a Bible study, Sharon was asked what she would do if it were her last day on Earth.

“I said I wanted to see the world,” Sharon said. “Because if lupus was going to take me out, then it was going come and find me in Paris on the Eiffel Tower or on a beach in the Virgin Islands.”

By chance, Northwest Airlines (now Delta) had put out an ad to recruit flight attendants. It was a dream job for Sharon. The job provided her with better insurance, and on her off days she could fly to any location on Northwest’s roster. Just as she had hoped, Sharon got a chance to see the world. Amazingly, Sharon started to find that her experience with lupus was helping her have a healthier mindset. “It really made me think of life in a whole different way, and just literally live. Just really get out there and live,” she said.

Sharon eventually moved back to Tallahassee, opening an eyelash parlor and holding down an office job. At that point, she experienced another flare-up. “In October in Tallahassee it is still 100 degrees outside, and I was wearing a wool coat,” Sharon said. “I was so sick.” Sharon packed up and returned to her hometown: Detroit, MI.

Now, too sick to work and without a job, Sharon did not have health insurance. The lupus was attacking her kidneys and the medicine that she was prescribed cost upwards of $3,000 for a month’s supply. Despite pinching pennies to afford her daughter’s medication, Sharon’s mother was willing to refinance her house to save her only child’s life.

That’s when Sharon’s luck shifted. One day, she visited a local lupus organization with the intention of buying a t-shirt, and she ended up walking out with a new job. Her new public relations position did not include benefits but being employed allowed her to purchase health insurance.

Although she had insurance, her share of the payments for her four medications was unaffordable; one of the therapies alone cost more than $1,000 per month. That’s when Sharon found out about the HealthWell Foundation from a Google Alert. HealthWell is a nationwide non-profit providing financial assistance to insured patients who are still struggling to afford the medications they need (and sponsor of this blog).

“Literally, HealthWell saved my life,” Sharon said. “I didn’t have to incur any debt, my mother didn’t have to refinance her house, and HealthWell saved the day.”


And Sharon wanted to save the day for others like her. She has become a leading activist for lupus awareness, starting her own advocacy group called Lupus Detroit, which offers lupus patients emergency grants. Sharon points out that there are two colors that are used for lupus awareness, orange and purple. She opted for orange for her organization because the color is “louder” and garners more attention. “Lupus needs all of the attention that it can get,” Sharon said.

Sharon is currently in remission and has been doing well since receiving a grant from HealthWell in 2011 that allowed her to afford her medications. “I was inspired by the work that HealthWell does to help people with their medications,” she said. “I just don’t believe that someone should have to choose between paying for their medication and feeding their children.”

And neither do we, Sharon. Keep up the excellent work.

If you are inspired to help, consider raising awareness during Lupus Awareness Month and showing your support. Here are some suggestions:

  • Make a donation to HealthWell’s SLE Fund in honor of a family member or loved one who is battling lupus.
  • Celebrate World Lupus Day on Saturday, May 10th.
  • Put on Purple on Friday, May 16th and visit The Lupus Foundation of America’s website at to learn how you can show your support.
  • Find your local Lupus Foundation of America chapter to learn about activities in your area.

Has lupus touched your life? Do you have plans to show support during Lupus Awareness Month? Share your story in the comments section.

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