How I Advocate for Myself and My Lupus Treatments (VIDEO) | MyLupusTeam

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How I Advocate for Myself and My Lupus Treatments (VIDEO)

Updated on January 2, 2024

Lupus activist Seda Bryant is an overcomer — a mother, writer, and designer who is using her gifts to turn pain into purpose. Systemic lupus erythematosus (SLE) disproportionately affects people of color, and racial disparities also impact lupus treatment.

Seda has three tips for getting the best lupus care as a person of color:

  1. Use an app or patient portal to message your doctor.
  2. Lean on your support network.
  3. Get a second opinion from another medical provider if needed.

“You can live a normal, beautiful, exceptional life with lupus. And don't you dare settle for anything less,” she encouraged.

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

Transcript

00:00:00:02 - 00:00:32:02
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, 26+ hospital admissions.

00:00:32:07 - 00:00:57:00
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, number 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?"

00:00:57:07 - 00:01:20:07
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.

00:01:20:07 - 00:01:36:04
You can live a normal, beautiful, exceptional life with lupus. And don't you dare settle for anything less.

Updated on January 2, 2024
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