World Lupus Awareness Day: Why We Need Awareness

World Lupus Awareness Day: Why We Need Awareness

Lupus is a disease that was frequently tested on the television show House, but in reality, the condition is no laughing matter. According to Medical Daily, 17,000 people from 16 countries, including North and South America, Asia, and Europe, were surveyed by GlaxoSmithKline, and roughly 36 percent of people believe that lupus is a condition that can be caught from sharing food with someone who has lupus. Many were also unaware that lupus was even a real disease; it is misinformation such as that which leads to misunderstanding about what is, in reality, a very serious condition.

Women tend to be affected by lupus more than men, and overall, blacks, Hispanics, and Asians experience lupus more than those of Caucasian descent. According to US News and Health Report, some five million worldwide are affected by lupus, and cases can range from mild to severe. Some of the most common symptoms include fevers, rashes, hair loss, mouth ulcers, fatigue, pain, and chest pain, and those struggling for a diagnosis may often wait weeks or months for a final confirmation that they have lupus.

The newly-launched World Lupus Foundation has banded together to provide education and services regarding lupus and advocate for lupus patients as well. Dr. Susan Manzi, the director of the Lupus Center of Excellence at the Allegheny Health Network in Pittsburgh, Pennsylvania, said that lupus is often considered by the public on the same level as HIV or AIDS and become concerned that the condition is contagious.

“When people hear that lupus is an autoimmune disease, they immediately equate it to other diseases of the immune system, like HIV and AIDS,” she said. “In the absence of knowledge, people mistakenly believe that lupus is a contagious disease.”

Actress and singer Selena Gomez is perhaps one of the most public faces of lupus, having had chemotherapy to combat the chronic autoimmune condition in 2013. A flare caused the cancellation of her “Stars Dance” tour, according to Business Standard. Now that she’s hitting the stage once again, this time in her “Revival” tour, she has announced plans to donate some money from ticket sales for the tour to the Alliance for Lupus Research.

The singer came under heavy fire during her break for treatment, with several outlets suggesting that perhaps the singer was being treated for addiction rather than for lupus. Gomez said that she was angry by the accusations that she was struggling with addiction.

“I wanted so badly to say, ‘You guys have no idea. I’m in chemotherapy. You’re a**holes,'” she told Billboard. “But I was angry I even felt the need to say that. It’s awful walking into a restaurant and having the whole room look at you, knowing what they’re saying. I locked myself away until I was confident and comfortable again.”

Lupus can affect multiple body systems, including the kidneys, blood cells, and brain, and the potential to cause stroke in those who have the disease can come on multiple fronts. It was because of that risk of stroke that Gomez took a break.

Writer Marisa Zeppieri-Caruana, blogger on LupusChick.com, said on US News and Health Report that she felt that taking an advocacy role helped her deal with lupus by efforts to eliminate the stigma associated with the condition.

“Speaking openly not only allows for an opportunity to educate but can also do something incredible – it can void and overrule the stigma and shame that often surrounds invisible disease,” she wrote of her experiences as a lupus advocate.

She has been a lupus patient for 15 years, with multiple flares of the condition that left her wheelchair-bound.

Medical Daily notes that lupus can mimic symptoms of other conditions, including diabetes, fibromyalgia, and Lyme disease, which does not always help in confirming a patient has lupus. The disease is so named for the butterfly-shaped rash that appears on the face of many lupus patients. In the early days of recognizing the disease, doctors thought this rash looked something like a wolf’s bite, so the disease was named lupus.

Researchers have apparently discovered that there might be a mechanism associated with the X chromosome that may be involved with lupus, and this finding can be significant. Women carry two X chromosomes while men carry an X and a Y chromosome. The X chromosome tends to carry more immunity-related genes than the Y chromosome, which makes women more likely to have an autoimmune disorder such as lupus.

[Photo by Jason Kempin/Getty Images for LACMA]

Comments