Connect with others who understand.

Sign up Log in
Resources
About MyLupusTeam
Powered By
See answer

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

A MyLupusTeam Member

I agree that it's really hard to get a diagnosis when you have an autoimmune disorder but i'm not sure that it's race related. I am a white woman with cerebral palsy and doctors also wrote off my… read more

October 15
All updates must be accompanied by text or a picture.

We'd love to hear from you! Please share your name and email to post and read comments.

You'll also get the latest articles directly to your inbox.

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service.
Privacy Policy
All updates must be accompanied by text or a picture.

Subscribe now to ask your question, get answers, and stay up to date on the latest articles.

Get updates directly to your inbox.

This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service.
Privacy Policy

Hi, I’ve Been A Sle Patient For 18 Yrs, My New Blood Test Show Negative For SLE? How Is This Possible? Thank You, Bless You All 🙏🏼🦋

April 15, 2024 by A MyLupusTeam Member 5 answers

Related Articles

Turmeric is more than just a seasoning. This bright, golden-yellow spice may help fight inflammat...

3 Easy Dinner Recipes With Turmeric

Turmeric is more than just a seasoning. This bright, golden-yellow spice may help fight inflammat...
Shannon Boxx is a three-time Olympic gold medalist and a World Cup champion with the U.S. Women’...

Lupus Fatigue: 3 Tips for Energy From Soccer Pro Shannon Boxx (VIDEO)

Shannon Boxx is a three-time Olympic gold medalist and a World Cup champion with the U.S. Women’...
Lupus is a conundrum - not easily solved, a puzzle, and a very challenging disease. I have come s...

Member Spotlight: Living Your Best Life Despite Lupus Symptoms

Lupus is a conundrum - not easily solved, a puzzle, and a very challenging disease. I have come s...
What does lupus mean to me? For me, lupus was first and foremost an ANSWER after numerous tests a...

Member Spotlight: The Start of a New Chapter

What does lupus mean to me? For me, lupus was first and foremost an ANSWER after numerous tests a...
by KristieBauerChronic pain is not as common in teens and young adults, but that doesn’t mean it ...

What I Want Others to Understand About Lupus

by KristieBauerChronic pain is not as common in teens and young adults, but that doesn’t mean it ...
"Why am I sharing this with you? My hope is to share with you not only a part of my journey but t...

Jazmin’s #LupusStrong Story

"Why am I sharing this with you? My hope is to share with you not only a part of my journey but t...

Recent Articles

Among other unusual symptoms, lupus can cause a cool, tingling feeling that some people describe ...

Can Lupus Cause a Cool, Tingly, Menthol Feeling in Your Arms or Legs?

Among other unusual symptoms, lupus can cause a cool, tingling feeling that some people describe ...
Lupus can overlap with other health conditions, leading some people to receive additional diagnos...

Sjögren’s and Lupus: Are They Related?

Lupus can overlap with other health conditions, leading some people to receive additional diagnos...
Systemic lupus erythematosus (SLE) — often just called lupus — is an autoimmune disease that can ...

7 Reasons Why Your Arm Feels Like You Got a Flu Shot if You Have Lupus

Systemic lupus erythematosus (SLE) — often just called lupus — is an autoimmune disease that can ...
Hydroxychloroquine (HCQ), commonly known by the brand name Plaquenil, is often prescribed to redu...

Should You Take Hydroxychloroquine at Night?

Hydroxychloroquine (HCQ), commonly known by the brand name Plaquenil, is often prescribed to redu...
If you have lupus, you may be familiar with how it can cause scaly, itchy skin and skin rashes. B...

Chapped Lips and Lupus: Causes and 5 Ways To Cope

If you have lupus, you may be familiar with how it can cause scaly, itchy skin and skin rashes. B...
“Does anyone else get hot flashes from taking prednisone? I feel like I’m in a sauna,” said one m...

Does Prednisone Cause Hot Flashes?

“Does anyone else get hot flashes from taking prednisone? I feel like I’m in a sauna,” said one m...

Thank you for subscribing!

Become a member to get even more: