Lupus—a complex, devastating and life-changing autoimmune disease that currently has no cure—is not easily understood or explained. It is also an illness that far too many people have not heard about or know very little of at this point in our history. Yet the facts are that lupus affects 1.5 million Americans and has a serious impact on our economy in terms of lost productive work hours. Moreover, the emotional toll of this disease, which disproportionately affects Black women, is immeasurable. According to the Lupus Foundation of American, lupus is two to three times more prevalent among women of color—African-Americans, Hispanics/Latinos, Asians and Native-Americans—than among Caucasian women. The most recent available statistical research indicates that lupus affects 1 in 537 young African-American women.
One such woman is Camille Gordon Fanfair, a close family friend and 41-year-old mother of four, who has been living with lupus for the past 12 years. Camille is just one of the many women I know who are courageously living with lupus, and every day, despite their pain and debilitating symptoms, refuse to succumb to victimhood and are doing their part to bring about greater awareness of this disease. It is through their lives I have come face-to-face with lupus, referred to by medical experts as “the disease of a thousand faces” because of its varied symptoms and ability to mimic other diseases. It is through my personal experiences with these friends that I know about the pain associated with “flare ups” or being fatigued to the point of debilitation. Therefore, for a number of years, I have been attentive to the cause of the afflicted with concrete legislative action at the state level. My aim as always is to ensure that as state legislators we do our part in securing positive health outcomes for the people we represent.
So during this Lupus Awareness Month, I am raising the volume on my support. I have done so by sponsoring and supporting legislation that not only increases awareness of the disease statewide but also provides for education, research and financial support. In my bill before the Senate, I call for the authorization of a lupus awareness license plate and creating the lupus research and education fund. This bill provides a way to raise money for an education and prevention program by allowing individuals to show solidarity for those suffering with the disease by purchasing a license plate. The creation of the Lupus Research and Education Fund will support ongoing research to improve the quality of life for patients and, hopefully, make a significant contribution toward finding a cure. A second bill before the Senate provides a way to raise funds for an education and prevention program by having a voluntary taxpayer check-off on both individual and corporate taxpayer tax forms. These funds will be used to educate the public regarding this disease and to increase its awareness.
In 2005, when my friend Camille was diagnosed with lupus, she had only heard about the disease once before, when she was 13 years old. This “knowledge” consisted of cursory information that her friend’s mother had died of lupus. As she recounted to me in conversation, when she was later diagnosed after repeated doctor visits back and forth between an allergist and a rheumatologist, it was as though she had been hit with a sledgehammer. “My first thought was why me?” she said. “I was devastated.” At the time Camille said she had no idea about the seriousness of the disease so her next reaction was to ask, “How do I get rid of it?” As she ultimately found out the hard way, there is currently no cure for this disease, which can cause inflammation and tissue damage to virtually any organ system in the body, including the skin, joints, blood and blood vessels, heart, lungs, kidney and brain.
With a supportive husband, family and community, Camille has been able to control her “flare ups” as best as she can. But with the unpredictability of the disease, every shadow of a symptom carries a gun. The worst, she expressed to me, was contracting pneumonia that put her in and out of hospitals for months. Then there are the silent effects, such as depression, anxiety and fatigue—all symptoms of the disease not easily understood, even by some doctors and caregivers. “That’s the area where I would like to see increased awareness,” Camille told me. “It only adds to the pain and suffering when our friends and loved ones think that we are just being lazy or moody. But these are all symptoms of the mix bag of tricks that comes with this great imitator of a disease.”
I am happy that as a friend to people such as Camille and other women living with lupus, I am able to personally lend a hand, a comforting voice and a supportive shoulder when needed. But wouldn’t it be so much better if as a state senator I can also lend a voice to the cause and pass the kind of legislation that that will make, not just their lives, but the lives of 1.5 million other people, better? Let us together unmask this great imitator by finding a cure for the disease of a thousand faces. (State Senator Kevin Parker)
Famous People Diagnosed with Lupus:
Toni Braxton
Selena Gomez
Lady Gaga
Nick Cannon
Michael Jackson
Seal
Flannery O’Connor
Ferdinand Marcos
Sophie Howard
Trick Daddy
J Dilla
Tim Raines
Donald Byrne
