“Nuestra Voz, Nuestra Ciencia” — Our Voice, Our Science — is a powerful reminder that science, especially medical research, should reflect all voices. During Hispanic Heritage Month, we honor the strength, resilience and leadership of the Hispanic and Latino communities, and we recognize the urgent need for lupus research that accurately represents the people it aims to serve.
At the Lupus Foundation of America, we are proud to uplift the voices of advocates like Nicolette “Nikki” Santiago, a young Latina lupus warrior and leader in the Lupus Research Action Network (LRAN). Nikki has become a powerful force in the lupus community, empowering others, fighting misinformation and advocating for change in how research is done and who gets included.
Nikki’s lupus journey began in August 2013 with an itchy rash near her belly button. Over time, the rash spread to her knees, elbows and joints, eventually covering her entire body. The symptoms quickly intensified. “The rash soon became painful, making it difficult for me to straighten my fingers at times,” she remembers. “I also experienced hair loss, fatigue, and fevers.”
It wasn’t until March 2014 that Nikki received an official diagnosis. That long stretch of not knowing what was wrong left her feeling isolated and frustrated. But the turning point came when she began to seek people who could relate not only to her medical condition but also to her experience as a Latina navigating a chronic illness.
“I needed others who could relate to the cultural implications of my experience, such as explaining what lupus is in Spanish. I wanted to enjoy life while also learning to manage a chronic illness. I realized I wasn’t alone in this journey.”
Through volunteering, becoming a support group leader and eventually joining LRAN, Nikki found a meaningful way to turn her experience into action. “When advocacy roles became available, I embraced them wholeheartedly,” she says. “I wanted to reach out to newly diagnosed individuals and share that it is possible to live well while managing lupus.”
As a member of LRAN, Nikki helps educate others about the importance of clinical trials. Her work is a true embodiment of Nuestra Voz, Nuestra Ciencia — using her own story to bring others into a space where they feel seen, heard and safe.
Representation, Research and Rebuilding Trust
“Lupus affects Black and Hispanic women two to three times more than White women,” Nikki explains. “Yet these groups participate in clinical trials at much lower rates.”
She points to two key reasons for this: a lack of outreach and education in Latino communities, and deep-rooted fears stemming from a history of unethical medical research. “I believe my involvement can help others feel more comfortable,” she says. “Especially if I can explain that the clinical trial has already been conducted and vetted.”
Being in the room and part of the process is how Nikki believes change begins. It’s how our voices become part of our science.
Misinformation about clinical research runs deep. “One common belief is that all clinical trials involve taking medication,” Nikki explains. “While this is true for some studies, it is not the case for all. In some instances, participation may involve having blood work done or answering questions about your experience living with lupus. And if you decide not to continue with the study, your information will be destroyed, respecting your privacy.” Nikki sees her cultural identity as an asset in this work.
“Being Latina means treating people like family. When I share my story, I hope others see someone like them. Just as I want the best for my family, I want the best for my community.”
Her involvement with RAY (Research Accelerated By You), a trusted lupus data platform, has allowed her to encourage younger generations to explore how they can get involved in advocacy and research, too. “If I can earn their trust, they’ll know I have their best interests at heart,” she says. “Trust is essential for participation.” That’s what Nuestra Voz, Nuestra Ciencia is all about: making sure lupus communities are represented in the science that shapes our care.
But building trust is only the first step — the way knowledge is shared is just as important. Much of the information about clinical research is presented in complex medical terms or only in English. “We believe we should create opportunities for clinical trials in Spanish and target places where the Spanish-speaking community gathers,” Nikki urges. “It would be even more effective if we could connect individuals with someone from their community — like another lupus warrior — who can relate to their experiences.”
Shaping the Future: Equity, Empowerment and Action
Nikki has taken her voice to national stages like the National Lupus Advocacy Summit and the Lupus & You Empowerment Conference. “These experiences filled me with hope, as it showed me that significant work is being done and that these companies are prioritizing the needs of patients and striving to make treatments more accessible,” she says.
Those events also offered space to talk about equity in health care and the systemic gaps that still exist. “It is crucial for leaders in Washington, D.C. to recognize the real-life impact of their decisions by putting faces to their constituents and understand how their policies affect people living with lupus.”
Nikki’s message to other Hispanic lupus warriors, especially those from immigrant families or bilingual households, is simple and powerful: “Find your community.”
“After my diagnosis, realizing I wasn’t alone made all the difference,” she says.
“Connect with people who understand and can support you. And advocate for yourself by finding a doctor who will listen to your concerns and help you make sense of your diagnosis.”
Nikki believes real equity in research means removing barriers — financial, logistical, and emotional.
“For clinical trials to be a viable option for everyone, particularly for people of color, they must be accessible. That means covering outreach, transportation support, and compensation. It is crucial to protect and support those who wish to participate, ensuring a safe environment for their involvement.”
Nuestra Voz, Nuestra Ciencia — Our Future
This Hispanic Heritage Month, let’s honor the voices that are shaping the future of lupus research. Let’s commit to making sure that Nuestra Voz, Nuestra Ciencia isn’t just a phrase, it’s a reality.
By showing up for ourselves, for each other, and for the future, we can build a world where science can amplify the many voices of lupus.
Want to learn more about how you can get involved in lupus research or advocacy? Visit lupus.org/research to explore opportunities to make your voice and community heard.
This post was originally published on this site