Your Guide to Systemic Lupus Erythematosus

Become a Lupus Advocate: 3 Tips To Get the Best Care (VIDEO)

Written by MyLupusTeam

Updated on January 17, 2025

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Hello. My name is Seda Bryant, and I live with systemic lupus erythematosus, stage 4 lupus nephritis, antiphospholipid syndrome, and Raynaud’s disease. My lupus story started in 2011, where, after years of medical problems and misdiagnosis, I was given only three weeks until total organ failure. Lupus really dropped a bomb on my life. I experienced a lengthy journey to remission, and it included two rounds of chemotherapy, dialysis, and 26-plus hospital admissions.

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Despite the fact that lupus predominantly affects people of color, I have had several instances where I felt like my care was affected because of my race. So, the advice that I give people is, No. 1: If your medical group offers an app, I would use that to message your doctor. Writing things down strips away a lot of the layers, and it literally becomes a black-and-white issue of “Did they address your needs or not?”

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It also creates a time-stamped paper trail in case you need to file a grievance or take other actions. Secondly, I would heavily lean on friends and family or your support system. Take them with you to doctors’ appointments so you have witnesses to what’s going on and especially, especially, especially if you have to go into the hospital. Three is, get a second or third opinion if you feel like your concerns are being dismissed or you’re being discriminated against.

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You can live a normal, beautiful, exceptional life with lupus. — and don’t you dare settle for anything less.

“Lupus really dropped a bomb on my life,” Seda Bryant said. However, she has overcome the blow of being diagnosed with this chronic disease. As a mother, writer, and designer, Seda is using her gifts to advocate for people with lupus. In addition to living with systemic lupus erythematosus (SLE), Seda has lupus nephritis and other autoimmune diseases. Seda went through years of medical issues before getting an accurate diagnosis.

SLE disproportionately affects women, particularly women of color, according to the Office on Women’s Health. Black women are three times as likely to be diagnosed with lupus as white women. The condition is also more common in Hispanic, Asian, Native American, and Alaskan Native women than in white women.

Racial disparities can affect lupus outcomes. For example, kidney complications, like lupus nephritis, occur more in African Americans, Asian/Pacific Islanders, and Hispanic people with SLE, according to a study in the journal Arthritis Care & Research. Racial disparities can also have an impact on the lupus treatment a person receives.

“Despite the fact that lupus predominantly affects people of color, I have had several instances where I felt like my care was affected because of my race,” Seda shared.

3 Tips for Navigating Lupus Care

Seda offers three tips for getting the best lupus care as a person of color.

1. Communicate in Writing

Use an app or patient portal to message your doctor. “Writing things down strips away a lot of the layers,” Seda explained.

2. Lean on Your Support Network

Bring a family member or friend to medical appointments “so you have witnesses to what’s going on,” Seda recommended. This is particularly important if you need to be hospitalized, she said.

3. Get a Second Opinion

You don’t have to settle for a doctor who isn’t helping you. “Get a second or third opinion if you feel like your concerns are being dismissed or you’re being discriminated against,” Seda advised.

Finding Hope With Lupus

Seda knows all too well that life with lupus can throw curveballs. On her journey, she’s gone through chemotherapy, dialysis, and dozens of hospitalizations. She has also experienced depression and anxiety related to her health. Seda wanted to share her story of achieving lupus remission because she encountered many people who knew someone with lupus who didn’t have a positive outcome.

“I wanted to be someone with lupus that they knew was thriving,” she said. “When I started to share my journey on social media, I found that it not only empowered me, but it empowered so many others.”

Seda uses her online platform to help people with lupus connect with each other and to offer a message of hope. She wants anyone with lupus to understand that health difficulties don’t have to be the end of the story: “You can live a normal, beautiful, exceptional life with lupus — and don’t you dare settle for anything less.”

Watch the video to see how Seda encourages people of color to self-advocate for the best lupus treatment.

References