What to Expect as a Woman of Color With Lupus
Key takeaways:
Gabrielle Davis, diagnosed with lupus in 2009, needed a kidney transplant for years before one became available in 2021.
She calls her kidney transplant “life changing.”
When Gabrielle realized many women of color don’t get the information they need about lupus and kidney failure, she began advocating for them by starting a website, Lupus Sistas.
When Gabrielle Davis woke up one Sunday morning in July 2021, the 38-year-old realized she’d missed two 2AM calls from an unknown caller.
Because she had lupus and kidney failure, she knew right away who had called, even before she listened to her voicemail. Then her heart broke. For years, she’d been waiting for a kidney transplant. But when that call about an available kidney finally came, she missed it.
“They don’t just stick around waiting for you,” she says. “It’s first come, first served. So if you don’t answer the phone, then [the kidney] goes to the second person in line.”
She says she always kept her phone on, but for some reason, it was on silent that night.
“I was in tears because I thought I really screwed up my chance to be well and to be well for my son,” Gabrielle says. Not one to give up easily, she called back and learned that, amazingly, the kidney was still available.
By noon that same day, she had a new kidney. After the transplant, she says, the improvement was immediate.
“When you’re on dialysis, you can look like a zombie. I didn’t even look like the same person. All the inflammation, and my eyes were yellow,” she says. “When I woke up from the transplant, the whites of my eyes had returned.”
History of a lupus journey
It had been a long, difficult path. Gabrielle was diagnosed with lupus at age 29. That was in 2009, less than a year after she got married. She spent her first married Valentine’s Day in the hospital. In 2016, she started on dialysis for kidney failure.
Then, in 2019, she and her husband had a baby. Because she was not well enough to carry a baby, they used a surrogate.
Gabrielle, a former journalist, took care of their baby boy and worked full time in corporate communications while undergoing 8 hours of dialysis every night.
“I was like the rabbit from ‘Alice in Wonderland,’ always behind time,” she says. Things sometimes went wrong with the dialysis overnight. As a result, she was often running behind.
“Many times, the machine messed up, or there were a lot of times I was in pain,” she says. “It wasn’t like dialysis was a foolproof thing. It was a means for me to continue to live, but there were always challenges associated with it.”
If she had a difficult or painful night with the dialysis machine, she sometimes woke up late in the morning. Then she was late to drop off her son and late to work, stayed at work later to make up the missed time, and was late to pick up her son. Then she’d have to fill her stomach with a dialysis solution by a specific time so she could get on the machine at a certain time, all so she could get up at the right time in the morning.
She was on dialysis every night for almost 5 years before her kidney transplant.
Currently, her kidney function is good, and she’s doing well. Less than a year after her transplant, she ran a 5K. She’s run several more since then. “I work out 6 days a week. It’s pretty strenuous training,” she says. “I’m in the best shape of my life at 41. I’m so grateful.”
Advocating for women of color with lupus
Although Gabrielle is doing really well, not everyone is. That’s what inspired her to start Lupus Sistas, a group that advocates for Black women with lupus, many of whom don’t have access to the information and support she did.
“The Black woman is often the one who’s caring for everyone else in her family or her friends. Usually, she’s the one that’s leaned on and depended on,” Gabrielle says. “Even when it comes to illness, it tends to be, ‘I have to still make sure everybody else is good before me.’”
Gabrielle says many women of color don’t receive appropriate information about managing lupus and the treatments they need.
“With a disease that’s likely to be diagnosed 2 to 3 times more among people of color, if you’re not addressing the audience or the patient that is experiencing this disease the most, you’re not addressing it at all,” she says. “Because when you address the severe cases, you can address all cases.”
Gabrielle started the Lupus Sistas website to share information about her life and how to manage lupus, especially being married and as a mother.
“It’s just a forum about what everyday life looks like as a lupus warrior — the highs, the lows, the victory, the diagnosis, all of that,” she says. “It’s putting a real face to it.”
Real learning, she says, often comes from peer-to-peer relationships. “Because that’s the safe place. I can’t tell you how many people have been in my DMs asking me about this and asking me about that. Just being able to have those conversations there that might not otherwise happen.”
Gabrielle says some people don’t trust medical outlets or feel they’re heard. “But I’m a safe place for them to vent, be comfortable asking questions, or even encourage them to be empowered,” she says.
“A lot of times we’re hearing voices other than patients, especially when it comes to medication, about all these things that are supposed to be for lupus warriors. But patients weren’t being brought to the table, and especially Black people were not being brought to the table.”
She says she tries to bring some of those perspectives to patients.
The need for policy changes
Gabrielle is also a big advocate for policy change.
“[For] people who have renal failure when it comes to lupus, why isn’t it being caught sooner?” she asks. “What can we do to make sure there’s certain testing in place right away that might give hints to kidney disease before? Why aren’t primary care physicians more well-versed on lupus and what all needs to happen at that stage before it gets to the specialist level?”
She blogs about her transplant journey at lupus.net and also works with pharmaceutical companies.
She says there is some progress. “Funding is continuing to happen, research has continued to happen, and there’s definitely movement in making sure that underrepresented communities are being seen and heard and communicated to. Not everybody has an email, not everybody has internet access,” she says.
Gabrielle wants to elevate voices that represent different parts of the lupus journey and various socioeconomic backgrounds and ethnicities.
“That’s what I see myself doing in advocacy now — being a voice to close the gap and represent those who often go underrepresented, the minority community.”
Why trust our experts?
