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Saturday, December 9, 2023

Lupus the disease you likely know nothing about

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What illness affects more than 15,000 Hoosiers, 90 percent of whom are female? If you guessed lupus you are correct. If you are wondering what lupus is you are not alone.

Lupus has been nicknamed “the great imitator” because its symptoms are not specific to lupus and often misdiagnosed. The body can’t recognize the difference between healthy tissue and foreign antibodies, so it attacks healthy tissue, causing inflammation.

Extreme fatigue and painful, swollen joints in the feet, legs and hands are oftentimes debilitating. In extreme cases, it can attack the kidneys or cause inflammation of the brain.

The Lupus Foundation of America (LFA) has chapters in almost every state, lending support services, outreach opportunities, educational programs and financial aid to those in the field of lupus research.

Several women who help coordinate the Walk for Lupus Now event in Indianapolis benefiting the LFA or participate as team captains, walkers or volunteers, have chosen to share their experiences.

“My muscles and joints became very weak and painful. I could not even squeeze a tube of toothpaste or shampoo to get it out of the bottle. I needed help at night if my covers would fall off of me because I was too weak to lift my arms,” says Joann Crouch, diagnosed with lupus at age 18. During her pregnancy, doctors monitored Crouch and her fetus closely. While the risk is low, there is a possibility that a fetus can develop lupus if the mother is afflicted. Currently, there are no tests that can be done on infants to see if they have lupus.

“Knowing that there is a possibility that my daughter may have lupus inspires me even more to spread awareness, raise funds for the foundation and work towards a brighter future for lupus patients,” said Crouch.

Ninety percent of lupus patients are women of childbearing age, usually between the ages of 15 to 44. African-American women have a two- to three-times higher risk for getting lupus. The reason for this, along with the cause of the disease, is unknown. Research in the last decade has accomplished more in the way of findings than in the last 100 years, but even with that new lupus medication has not been created in more than 50 years.

Some cases of lupus can be severe enough for hospitalization. “My jaw became so swollen I couldn’t open my mouth up enough to eat,” said Lidelia Vazquez. “My hands were so locked and in pain that I could not pick up my daughter to hold her to nurse her.” Over the last year, Vazquez has endured four surgeries, including a full hysterectomy and experiences a flare up at least once a month.

Lupus patients have been or are afraid to speak of the disease fearing the lack of education and awareness about it among the general population.

“There is a stigma with lupus because people don’t know what it is, and they usually can’t tell the person is sick by looking at them,” said Katie, a lupus sufferer who did not want to give her full name.

Roxann Johnson-Bey, diagnosed at age 22, has had lupus for nine years and can remember several instances when she mentioned the illness to peers that had no idea what it was. She did not know anything about lupus when her doctor broke the news that she had it.

“Bringing awareness educates people and opens the way for a better understanding of the illness and also provides insight as to what people go through when the severity of the disease makes itself prominent,” said Johnson-Bey.

Leigh Hinkle began working for the LFA Indiana Chapter in 2009. Her first goal was to help organize a successful Walk for Lupus Now event in Central Indiana. “The walk not only serves as our main fundraiser, but also an opportunity to educate the public on lupus and provide support and services, as well as opportunities for lupus patients and their families to get together,” said Hinkle, whose responsibilities as a staff member include helping to coordinate support groups, health fairs and outreach and education programs.

“There is no cure for lupus so each person must learn how to manage their chronic condition. Lupus patients are amazing, inspiring individuals.”

“‘Someone you know has lupus,’ because more than 1.5 million Americans do,” said Lindsey Moistner, who was diagnosed with lupus at age 14, in sharing the LFA slogan.

For more information, visit www.walkforlupusnowwci.kintera.org or contact Leigh Hinkle at (317) 506-5786.

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