The Hidden History of Latina Women’s Health - Lessons from the Past Part 3. Uncovering Lupus: The Silent Battle in Our Communities

Venus Gines, Founder, Dia de la Mujer Latina
May 23
5 min read

An intimate journey into the hidden history of lupus, health disparities, and the fight for dignity and justice in Latina and African American communities. A Journey Through Pain, Perseverance, and Power

I was a flight attendant with dreams of becoming a lawyer. I had just been accepted to UNC Law School in Chapel Hill when my life took an unexpected turn.

After an in-flight accident, I was rushed to the emergency room in Los Angeles. As I sat describing my pain, primarily in my right knee, the doctor asked a surprising question:"When was your last mammogram?"

I immediately shot back with — “I don't need one. I'm Latina. Latinas don't get breast cancer.”

He gently insisted, reminding me that at 41, every woman should have had a mammogram. He performed a clinical breast exam, found a lump, and gave me a prescription for imaging. But he didn’t stop there. When I mentioned my joint pain, my headaches, and how sunlight seemed to trigger overwhelming fatigue, he ordered additional bloodwork.

A few days later, the call came: "You have lupus."

At that moment, my world shifted with 2 concerns: Breast cancer. Lupus.Two diagnoses — two battles — that I had never been prepared to face, especially coming from a culture where myths and misinformation still ran deep.

As I began to learn more, I quickly realized that my story was not unique. Lupus is a silent but devastating disease that disproportionately impacts women of color, particularly Latinas and African American women. What shocked me most was how little public awareness, research funding, and culturally competent care existed for a disease that affects so many in our communities.

In this new chapter of uncovering hidden health injustices, I invite you to walk with me through the forgotten history of lupus: how it was first diagnosed, how women like us have been overlooked for generations, and why understanding this history is vital to building a more just and compassionate future.

A Personal Awakening

When I first heard the words “You have lupus,” I was already grappling with the life-altering diagnosis of breast cancer. It felt as if my body was waging wars on multiple fronts. lupus, a disease that causes the immune system to attack its own healthy tissues, was something I had vaguely heard of, but never imagined would touch my life.

As I began to learn more, I quickly realized that my story was not exclusive. Lupus is a silent but devastating disease that disproportionately impacts women of color, particularly Latinas and African American women. What shocked me most was how little public awareness, research funding, and culturally competent care existed for a disease that

affects so many in our communities.

Historical Background: From Mystery to Misunderstanding

The history of lupus is a history of mystery, confusion, and neglect.

The earliest descriptions of lupus date back to the Middle Ages. The word "lupus," Latin for "wolf," was used by medieval doctors to describe the wolf-like facial sores they observed in some patients. For centuries, lupus was misunderstood as a skin disease, primarily because of these visible rashes. It wasn't until the 19th century that a French physician, Pierre Cazenave, formally identified lupus erythematosus, noting that it could affect deeper tissues beyond the skin.

Still, for much of medical history, lupus remained an enigma. Without advanced diagnostic tools, doctors often misdiagnosed lupus as other conditions including syphilis, tuberculosis, or even mental illness. Women who presented with symptoms like chronic fatigue, joint pain, and cognitive fog were often dismissed, labeled as "hysterical" or "emotional." The pattern was devastatingly familiar: when medicine lacked answers, it blamed the patient, especially if that patient was a woman of color.

It wasn’t until the mid-20th century that breakthroughs like the antinuclear antibody (ANA) test allowed doctors to more accurately diagnose Systemic Lupus Erythematosus (SLE). Yet even as scientific understanding grew, systemic biases in healthcare continued to leave Latinas, African American women, and other marginalized groups behind. The seeds of mistrust were planted deep.

Uncovering the Gaps: Why Lupus Hits Harder in Our Communities

As I began to pull back the layers of Lupus, one painful truth became clear: Lupus does not affect all women equally.

Statistics tell a stark story. Lupus is diagnosed nine times more often in women than in men, and among women, African American and Latina women are two to three times more likely to develop severe and life-threatening forms of the disease compared to white women.In fact, approximately 1 in 537 young African American women are living with lupus, a staggering figure that reveals how deeply this disease affects our communities.

Not only are we more likely to get Lupus, but we also tend to experience it earlier and more aggressively. Studies show that Latinas are at greater risk for serious complications, including kidney damage, heart disease, and vision problems. When left untreated or undertreated, lupus becomes a devastating lifelong battle. One that too many of our sisters face without the support, understanding, or care they deserve.

Adding to the urgency, lupus ranks among the top 20 leading causes of death for women aged 5 to 64 and for young Black and Latina women, it is alarmingly among the top five to six causes of death in ages 15 to 34.

Personal Reflection: Connecting the Past to My Present

Learning about the history of lupus and how it disproportionately impacts women who look like me, was both heartbreaking and empowering.It put into context so many moments when my symptoms were brushed aside, when I was told to "rest more" or "not stress so much," as if my pain could simply be wished away.It helped me realize that my journey with lupus was not an isolated story. It is part of a larger tapestry — one woven with threads of resilience, systemic neglect, and the quiet courage of women who endured without ever being fully seen.

At first, I felt anger. Why hadn’t I been warned? Why weren't we, as Latinas, taught to recognize the signs? But over time, that anger transformed into something deeper. It transformed into a personal commitment to share what I’ve learned. A commitment to break the cycle of silence and shame. A commitment to empower others with the knowledge that could save lives.

I carry my diagnosis with me not just as a burden, but as a banner, a call to action, a reminder that healing is not just personal, it is collective.

Call to Action: Healing Through Knowledge, Advocacy, and Community

Today, lupus remains a disease surrounded by mystery, fear, and too often, silence.But we are not powerless.

We must demand more research that includes Latinas, African American women, and other populations.We must advocate for culturally competent healthcare. This includes care that listens, respects, and responds to our lived experiences.

At the heart of this movement are Promotores and Community Health Workers (CHWs), trusted messengers who stand on the frontlines of our communities.They are the ones who can bridge the gap between complex medical systems and the guarded hearts of those who have been hurt before.Through culturally tailored education, navigation, and compassion, Promotores can guide families toward earlier diagnoses, better treatment adherence, and most importantly renewed hope.

Organizations like Día de la Mujer Latina are already leading the way, creating safe spaces where health education is not just delivered but received with dignity. By empowering Promotores and CHWs with the right tools and training, we are planting seeds of knowledge that will blossom into lives saved and communities healed.

This is not just about Lupus. It is about justice. It is about reclaiming our right to be seen, to be heard, and to be healed.

Closing Reflection

“After one ER visit, I learned quickly about breast cancer and Lupus, two battles I had never been prepared to fight. My journey began with myths and ended with disconcerted truth.”

Sources for statistics and health disparities cited throughout this article:

References

Lupus Foundation of America. (2024). Lupus Facts and Statistics. Retrieved from https://www.lupus.org/resources/lupus-facts-and-statistics
Centers for Disease Control and Prevention (CDC). (2024). Data and Surveillance: Lupus. Retrieved from https://www.cdc.gov/lupus/data-research/index.html