Back to Stories
Patient story

Patient Advocate, Journalist, and Parent: Gabrielle Davis

Meet Gabrielle: Turning To Hope Despite Lupus Nephritis

In 2009, at the age of 27, Gabrielle Davis’ first lupus nephritis flare interrupted her first Valentine’s Day as a newlywed– though, at the time, she didn’t know this chronic kidney condition was the cause of her exhaustion. Gabrielle was a full-time journalist at the time, busy with the events and networking necessary for a local news reporter, especially in a city as big as Orlando, Florida. At first, she thought her symptoms were related to increasing job stress.

“I was more exhausted than I’d ever been before, and my body was hurting beyond belief. I felt like I’d done a marathon without training or stretching,” she said. “The daily grind of reporting is exhausting, and I thought that was the cause, so I still went to Tampa with my husband to celebrate. But instead of going to dinner, I ended up in the emergency room for four days.”

While this ER visit didn’t result in an explicit diagnosis, it did lead Gabrielle closer to answers.

“I thankfully had a Hispanic doctor at the time who had a really good understanding of Black and brown patients. After looking at my tests, he understood right away that this was an autoimmune disease in the making,” she said.

Still, it took five months before Gabrielle could be seen by a rheumatologist. In the meantime, she was forced to regularly call out of work because she was literally too exhausted and in too much pain to get off of her couch.

When July 2009 finally came around, Gabrielle was diagnosed with systemic lupus erythematosus. Within a year, though, her diagnosis expanded to include lupus nephritis.

“My doctor took urine tests, blood tests, and a kidney biopsy. That’s how we learned that my kidneys were severely damaged to the point that function could not be brought back, which meant I was going to be in need of a transplant,” she said. “It was a lot to swallow, especially so soon after my lupus diagnosis.”

Through lifestyle changes and sheer willpower, Gabrielle’s health held steady for the next few years. However, her feet eventually began to swell even more, and she found that she was too out of breath to even sing at church. All of her worsening symptoms ultimately led her to start dialysis in November 2016.

“My kidneys were down to 4% function. I’d avoided dialysis until this point because I didn’t want to slow down or change my lifestyle any more, but I realized that it was literally a decision of life or death,” she said. “Some people think of dialysis as a lifeline, that it automatically improves your quality of life. In some ways, it can, but it also comes with complications. So as time passed, I was dealing with machines that sometimes didn’t work, with an infection in my peritoneal dialysis tube in my stomach, with 16 different hospitalizations in 2020 alone, and with a newborn son that my husband and I had through surrogacy.”

Throughout these years, Gabrielle slowly moved up the transplant list for new kidneys. When the fateful call finally came, it was 2:00 am. Both her and her husband’s phones were on silent, something that never happened.

“I woke up at 8:00 a.m. that morning, listened to this voicemail, and had a mini mental breakdown because I thought I’d missed my chance at a new life,” she said. “But within thirty minutes, I’d hunted this transplant coordinator down because I wasn’t willing to accept that I’d lost this kidney because I’d missed this phone call. By some miracle, the kidney was still available and, by noon, I was transplanted.”

Today, nearly three years post-transplant, Gabrielle is doing things she’d only dreamed of before. This includes running a ten-minute mile – as well as doing extensive advocacy work.

“I started Lupus Sistas because I had not seen Black women advocates. As a Black woman, I know that there’s a particular approach that we need in order to accept support: We need to feel safe and seen, and I think it takes another Black woman to fully understand that,” she said. “Health equity demands that consideration is coupled with action. We have to consider minority patients and underserved populations, and there has to be practical solutions – including money, time, and capacity – dedicated to making sure these populations are cared for.”

In addition to her work as a patient advocate,Gabrielle is a public speaker for various organizations, as well as a writer for multiple well-known platforms.

“I’m so proud of younger me, who was knowledgeable to know that this work was needed, who took the risk and didn’t let fear stop something that is now so beautiful,” she said. “Recently, I was working with a healthcare partner and got to see how much they are truly valuing me. I also got to speak to people who are working in the field of kidney disease, to help renew their sense of purpose for this work.”

As much as Gabrielle has already accomplished in her 41 years of life, there are numerous goals she’s still working towards.

“There needs to be more education and awareness for lupus at the emergency level. A lot of lupus patients start in the ER, and they’re being seen by doctors who don’t understand the condition, so lupus patients are suffering because of a lack of education,” she said. “More personally, I know I’ve got a book in me, and I would love to make a living by doing advocacy work full-time. And obviously I want there to be a cure for lupus, but that goes without saying.”

At her core, Gabrielle is a storyteller. She’s also an expert at self-reflection, and is keenly aware of the lessons that her health has taught her over the years.

“Receiving a lupus diagnosis showed me who was truly in my corner. It also built my abilities of discernment and boundary setting. I’ve had to realize that I’m a mom who doesn’t necessarily have the capacity to do all the things I need to do. I’ve had to learn that, while they’re still going to get done, they’re going to get done in pain or despite fatigue,” she said. “So while I’ve had to unlearn a lot of things, I’ve also learned some things, like who can handle what information, who’s going to follow up to see if I’m okay, and who’s really going to be in this with me. I understand that it’s a heavy lift, but I’m worth the lift.”

Here are some other stories.

Patient Advocate, Journalist, and Parent: Gabrielle Davis

Patient Advocate, Journalist, and Parent: Gabrielle Davis

Meet Gabrielle: Turning To Hope Despite Lupus Nephritis
Read Story
Destigmatizing Epilepsy As A Children’s Book Author: Josie Martinez

Destigmatizing Epilepsy As A Children’s Book Author: Josie Martinez

Meet Josie: Emphasizing Representation for the Disability Community
Read Story