The Truth Staff
Joyce Goings has been a lupus sufferer and survivor for decades but until a year ago, she had not realized that there were so many others in the area, particularly Black women, who also suffered from the same fate.
Then she met Rachelle Roy and others during the leadup to the 2022 Lupus Awareness Walk and discovered a new community of women with whom she could share her journey.
Goings, 80 years old, has been suffering from lupus for 42 years – that is she was diagnosed 42 years ago. Goings suffers from discoid lupus as does Roy.
What exactly is lupus? Lupus is different things to different people in the affect on their lives but essentially it is for everyone a chronic health condition that lasts a long time and that currently has no cure.
It is a disease that involves the immune system and can damage any part of the body. The immune system is like a bodyguard against invaders, such as viruses, bacteria, and other germs. Normally, a part of the immune system works to fight off these invaders by making antibodies – molecules in the body that, when working correctly, protect the body from foreign invaders such as viruses and bacteria.
However, in the case of lupus, the immune system can’t tell the difference between the invaders and the body’s own healthy tissue. It creates autoantibodies – antibodies that destroy the body’s own healthy cells, which can cause inflammation and organ damage. that attack and destroy the healthy tissue, causing inflammation.
Over five million people around the world have some form of lupus. While anyone can suffer from lupus:
- Women ages 15–44 are most likely to develop lupus. In fact, lupus occurs 9 out of 10 times more often in women than in men.
- Women of color, including African American, Asian, Hispanic/Latina, Native American, and Pacific Islander women, are also more likely to develop lupus compared with Caucasian women.
- People who have a family member with lupus or another autoimmune disease are more at risk
Rachelle Roy, organizer of the Toledo area effort to bring awareness to lupus, was diagnosed with discoid lupus in 2005. She suffers from discoid, or cutaneous, lupus which primarily affects the face and results in frequent outbreaks and inflammation. A Scott High School graduate who attended Bowling Green State University and has been a letter carrier for 25 years, she first experienced a skin rash in her early 30’s – a skin rash that was not properly diagnosed in the initial stages. That early stage appeared as an acne breakout and the medicine prescribed was ineffective.
She quietly lived with the discomfort and the loss of self-esteem for years before accepting her fate and deciding that it was time to do something about the public’s indifference to the disease.
This year, Joyce Goings was one of the many women who participated in the Lupus Awareness Weekend that Roy organized. Wigs were collected from donors on Friday evening, many courtesy of Calvin Powell of Powell’s Beauty & Barber Supplies.
Saturday afternoon, the wigs were distributed to lupus survivors at the Mott Branch Library and Saturday night, Roy held a bowling night at All Strikes Lanes. Sunday, of course, was the traditional walk at Ottawa Park.
Roy was not the only organizer of lupus awareness events this past weekend, however. A luncheon was held on Saturday at Scott Park Banquet Hall that included a panel discussion.
In just a few short years, due to the efforts of a few dedicated activists, lupus, a disease that affects primarily women – 90 percent of those infected are women – and disproportionately African American women, has taken center stage here in Toledo as those activists attempt to inform and connect the community.