When Aleta was first diagnosed with lupus, she wasn’t ready to share her diagnosis with anyone beyond her closest family and friends. She wasn’t ashamed—far from it—but the idea of being treated differently made her uneasy. She didn’t want pity, nor did she want people to look at her and only see her illness.
“I was diagnosed with lupus 10 years ago, and my process to diagnosis was not an easy one. I was losing my hair, and I went to a dermatologist to see about the hair loss. At that time, I was told I was potentially stressed and the stress was causing my hair loss. So I was given something to help with that,” Aleta tells BlackDoctor.org.
The treatment worked temporarily. However, a couple of months later, she went back because the hair loss started happening again.
“They gave me something else,” Aleta recalls. “But then one day, I was starting to feel sick, like I thought I had the flu. So I went to urgent care because I had a temperature. They couldn’t really figure out what was wrong. They ran some tests, and the doctor then told me that I had a bladder infection. So they gave me an antibiotic.”
After a day or two, Aleta began to experience what she thought was an allergic reaction to the antibiotic.
“I had to end up going to the hospital again. I was having a flare — but at the time, I didn’t know that was a flare. I ended up developing the Malar rash on my face and my skin became discolored,” Aleta shares adding that she was given a steroid shot.
After seeing a new doctor, Aleta was once again given pain medication and told to get an allergy test.
“I had to go back to work. I was traveling to Washington, D.C., for work, and at a conference, I couldn’t eat dinner or anything. I stayed in my room, and overnight, I tried to get up, but I collapsed. I had to go to the emergency room,” Aleta shares.
Luckily, Aleta had friends in the area who helped her. She spent an entire week in the hospital as doctors drew blood and ran tests before officially being diagnosed with lupus.
“They kept drawing blood, doing tests. My white blood cell counts were low. I was seen by every department: infectious disease, oncology, hematology,” Aleta shares. “They were about to give me a bone marrow biopsy, but before they did, the last doctor they sent in was a rheumatologist. She just looked at me and said, ‘I think you have lupus.’”
Labs confirmed that Aleta had lupus, a condition that she knew nothing about.
“I didn’t know anything about the disease. They started explaining it to me. I was in such bad condition by the time I got diagnosed.
They said, ‘There’s no cure. You’ll be on medication for the rest of your life,’” Aleta says.
Adjusting to a new reality was daunting for Aleta. For a while, the single mother kept her diagnosis private. But as her condition improved, she faced new frustrations. At her worst, her physical symptoms were visible—swelling, stiffness, and fatigue that others could recognize. People sympathized because they could see she wasn’t “okay.” However, as her symptoms became less outwardly obvious, the reactions shifted.
“As my condition improved, it became frustrating in a different way. When I had visible symptoms, people were sympathetic,” Aleta notes. “But once those symptoms weren’t as visible, people would say things like, ‘Why are you so tired?’ or ‘Why can’t you walk long distances?’”
RELATED: Living with Lupus: “It May Look Different, But Life Goes On”
Finding Support in a Community
At a low point, Aleta decided to try something new: joining a support group for women living with lupus. What she found there changed everything. Hearing from women who had lived with lupus for 15 or 20 years—and were not just surviving but thriving—gave her a renewed sense of hope.
“These women were going about their normal activities, living their lives despite the challenges. It was inspiring,” she says. The group became a cornerstone of Aleta’s journey, a space where she could share her experiences, learn from others, and find the encouragement she needed.
She didn’t stop at just being a member, though. Being part of that community lit a fire in Aleta to give back. She realized how powerful sharing her own story could be. Lupus doesn’t affect everyone the same way, and hearing different perspectives is crucial for understanding the disease.
“Everyone’s story with lupus is different,” Aleta says. “I felt like people needed to hear from as many voices as possible. That’s what led me to advocacy.”
RELATED: A Black Doctor Shares Why Lupus Trials Need REAL Representation
Advocacy and Diversity in Clinical Trials
Advocacy became a natural next step for Aleta. She wanted to shine a light on the realities of living with lupus, particularly the gaps in treatment and the lack of medications specifically designed for the disease. Most lupus treatments, Aleta learned, were created for other conditions and had harsh side effects.
“The side effects can be terrifying,” Aleta explains. “Plaquenil, for example, can cause vision loss. Imagine already dealing with so much and then worrying about losing your sight. It’s hard to want to take medication when you know the risks.”
Aleta also became passionate about highlighting the lack of diversity in clinical trials. “A lot of the drugs we take now weren’t tested on people of color during their development,” she says. “Even if the drug is supposed to treat certain symptoms, the way it works can vary from person to person. If you want to know that a drug will work for you, we have to be part of the process.”
Programs like Lupus Therapeutics’ PALS (Patient Advocates for Lupus Studies) helped Aleta educate others on this critical issue. One aspect she appreciated most about PALS was its ability to break down the process of clinical trials into understandable terms.
“Many people think participating in a clinical trial makes you a guinea pig,” she says. “They picture animal testing and think the same thing will happen to them. But they don’t realize that before a drug even gets to the human phase, it’s already been tested for safety. By the time patients are involved, it’s about understanding long-term effects and how well the drug works.”
Aleta also explains that even drugs already on the market are still part of ongoing clinical trials, as researchers continue to study their long-term effects.
“When people learn about this, it changes their perspective. It opens them up to wanting to learn more and possibly participate. They realize it’s not just about taking risks; it’s about being part of something that could lead to better treatments for everyone,” she adds.
Looking Ahead: A Future of Hope
Aleta dreams of a world without lupus, but until that day comes, she’s focused on improvements that can be achieved now. She hopes for faster diagnostic tests to shorten the time it takes to identify lupus, which is often delayed.
She also wants to see better treatments—ones that are specifically designed for lupus, have fewer side effects, and are accessible to everyone.
“It’s not enough to develop great treatments if people can’t afford them or don’t have access,” Aleta says. “There should be equal access, regardless of where you live, your insurance, or your socioeconomic status. It shouldn’t be that I can get a drug because I have private insurance, but someone else can’t because they have public insurance. Everyone deserves the same chance at a better quality of life.”
A Personal Mission
Today, Aleta continues her work as an advocate, helping to educate and empower others while raising awareness about lupus and the importance of diversity in research. Her story is one of resilience, determination, and the belief that every voice matters.
“Lupus doesn’t define me,” Aleta says. “It’s just one part of my story. And by sharing that story, I hope I can help others find their strength, too.”
Advice for Others
Drawing from her own experiences, Aleta offers the following advice for others navigating lupus:
- Ask questions. “Don’t be embarrassed. Make sure you communicate how you’re feeling. If you’re considering a clinical trial, think about how it will impact your life—your work, medications, and schedule.”
- Accept help. “Accepting help was a big step for me. People want to support you. Also, setting boundaries and prioritizing rest is important. Just because you feel okay one day doesn’t mean you should overdo it.”
