Beyond the diagnosis: Lupus warriors walk towards hope and a cure

BALTIMORE — Lupus is an autoimmune disease that can attack just about anywhere in the body.

About 1.5 million people in the U.S. are living with the condition, and this Saturday, many of them will come together at the Walk to End Lupus Now in Baltimore to raise money for research — and hopefully, one day, a cure.

But beyond the purple pom-poms and signs are the personal stories of lupus warriors.

"They're the only ones who know how frustrating it is when you speak to a doctor and they dismiss you. They're the only ones who know how hard it is when you're spending money on medications and you're going through insurance, so that community is very, very important," said Shannon Blair, a Lupus warrior.

Their experiences are wide-ranging.

"I was misdiagnosed a few times. They almost took my appendix out," said Malaun Dodson.

"I really started to experience joint pain, some hair loss," said Mandy Remmell, an ambassador with the Lupus Foundation of America.

"When I was first diagnosed, there weren't many programs out there for men. What a lot of people don't realize is men with lupus, our symptoms and our issues tend to be a little more extreme," said Baltimore County resident Jamie Shepard.

"My husband and my family and my parents and my great friends… know what I'm going through, and I get up for them every day," said Jacqueline Wert.

Research and a personal connection:

Dr. Ashira Blazer, a rheumatologist and co-director of the Lupus Center at the University of Maryland, has dedicated her career to the disease — in part because of a personal connection.

"When I see my patients, I really see family," Blazer said.

While Blazer was in medical school, she learned a family member had been diagnosed with lupus.

Her research has focused on the disproportionate impact lupus has on people of color.

"People of color are more likely to get severe outcomes, including kidney injury and then go on to need dialysis. So I was really interested in that," Blazer said.

Her research took her to West Africa, where she studied a gene with implications for lupus patients around the world.

“I started to study this gene called APOL1,” Blazer said. “So I wanted to study that gene in the context of lupus and to understand how it affected patients here in the U.S., but also patients around the globe.”

Bringing lupus care into the community:

For the past two years, Blazer has been working to develop the University of Maryland Medical Center's lupus care program.

She says there has been a wealth of research, clinical care and new treatments for lupus, but one critical piece has been missing: connecting that information and care with the people who need it.

“For a really long time, especially in communities like West Baltimore, people have not known about the new innovations,” Blazer said.

Her goal is to close that gap.

“Understand what it is that people in our area need, and then bring education that speaks to that, bring interventions that speak to that,” Blazer said.

Blazer and the University of Maryland Medical Center's Community Advisory Board will be at the Walk to End Lupus Now this Saturday at Canton Waterfront Park. The event starts at 10 a.m.

WMAR is the media partner for the event.

For more information on how to participate or donate, visit Walk to End Lupus Now.

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