More Than a Diagnosis: Lupus in Sports and the Athletes Who Are Changing the Conversation

May is Lupus Awareness Month. And if you are not familiar with lupus, that is partly the point.

Lupus is one of the most common chronic autoimmune diseases in the world, and one of the least understood. It affects an estimated 1.5 million Americans, causes the immune system to attack the body's own healthy tissue, and can damage virtually every organ system from the kidneys to the heart to the brain. It has no known cure. Its symptoms: fatigue, joint pain, inflammation, and organ damage are unpredictable, often invisible, and frequently mistaken for other conditions. Many people living with lupus go years before receiving an accurate diagnosis.

It disproportionately affects women. And it disproportionately affects Black women, at roughly three times the rate of white women, with more severe complications and faster disease progression.

That is not a footnote. That is the story.

And at Beyond the Game Health, it is personal. Because our founder, Shamekka Marty, is living it.

WHO IS SHAMEKKA MARTY?

Shamekka Marty is the founder and CEO of Beyond the Game Health, a mission-driven organization that brings together sports, health equity, and community advocacy to create real impact where all three intersect.

She is also a lupus warrior, a kidney transplant recipient, and one of the most important voices in patient advocacy today.

Diagnosed with lupus at 30, Shamekka has navigated a journey that most people never see from the outside: multiple surgeries, a kidney transplant in 2023, and years of fighting a disease that attacks the body from within while still showing up, still leading, and still building something bigger than herself. In 2024, she achieved remission.

Her work is not informed by research alone. It is informed by lived experience, by what it actually feels like to sit in a doctor's office with a diagnosis that most people cannot pronounce, to manage a chronic illness while building a career, and to look around and not always see people who look like you being given the resources and the care they deserve.

That lived experience is not incidental to Beyond the Game Health. It is the foundation of it.

LUPUS IN THE SPORTS WORLD Shamekka is not alone in navigating high performance alongside a lupus diagnosis. Several elite athletes have faced the same reality, and their stories show both the physical demands of living with lupus and what it looks like to use a platform to change the conversation.

Shannon Boxx is one of the most decorated soccer players in U.S. history, a three-time Olympic gold medalist and World Cup champion. She was diagnosed with lupus in 2007 at age 30. At the time, she was in the middle of her playing career, managing extreme fatigue, joint pain, and the unpredictability that comes with a disease that can flare without warning.

She did not go public with her diagnosis until 2012, five years later, because she was afraid it would affect how coaches, teammates, and the public saw her. She has since been honest about that silence and what it cost others for her to stay quiet. Once she did speak out, she partnered with the Lupus Foundation of America and started showing up: fundraising walks, interviews, advocacy appearances, using her platform the way only a well-known athlete can. High school players who had never heard of lupus were showing up to walk with her

name painted on their faces.

That is what an athlete's voice can do.

Venus Williams withdrew from the 2011 U.S. Open citing Sjogren's syndrome, an autoimmune disorder closely related to lupus that causes debilitating fatigue and joint pain. For years she had trained harder than everyone around her, pushing through exhaustion that no amount of conditioning could explain. "No matter how hard I worked, I was exhausted, short of breath, and never felt in shape," she said. "It was really frustrating." Her diagnosis opened a wider conversation about autoimmune disease in elite athletes, and what it looks like to compete against a body that is quietly working against you.

Both stories share the same thread: diagnosis first, silence next, advocacy eventually. Imperfect, delayed, but meaningful.

WHAT LUPUS ACTUALLY DOES

To understand why lupus is so difficult in an athletic context, or any context, it helps to understand what the disease actually does.

Lupus is a systemic autoimmune disease, meaning the immune system turns on the body's own healthy tissue instead of protecting it. It can cause inflammation and damage in virtually any organ, the kidneys, heart, lungs, brain, joints, and skin. Symptoms vary widely from person to person and can shift from day to day. Some days look almost normal. Others are completely debilitating.

For athletes, the most devastating symptoms are often the least visible. Fatigue so severe that training feels impossible. Joint pain that flares without warning. Sensitivity to sunlight, a real issue for anyone competing outdoors. And the psychological weight of managing something the people around you often cannot see and may not fully understand.

The kidney complications are especially serious. Lupus nephritis, inflammation of the kidneys caused by lupus, affects up to half of all lupus patients and is one of the leading causes of kidney failure in the lupus community. Shamekka's kidney transplant in 2023 is not a rare outcome. It is a reality that far too many people living with lupus face.

For Black women, the picture is even more sobering. Black women develop lupus at roughly three times the rate of white women and experience faster progression and more severe complications. That gap is not just genetic, it reflects decades of healthcare disparities, delayed diagnoses, and a medical system that has historically undertreated and dismissed the symptoms of Black women.

This is not just a health story. It is a health equity story. And it is why having a Black woman founder at the helm of Beyond the Game Health, one who has lived this from the inside, matters deeply.

BREAKING THE SILENCE

Shannon Boxx waited five years to go public. She has said the fear was real, fear that the diagnosis would overshadow everything she had built, that being sick would become the thing people remembered instead of the gold medals. That fear is not irrational. It is a rational response to a sports culture that still too often treats medical vulnerability as a liability.

That same fear keeps countless people from talking about lupus at all, in locker rooms, in doctor's offices, in families. And the silence makes the disease more dangerous. Lupus is nicknamed "the great imitator" because its symptoms mimic so many other conditions. That mimicry leads to an average diagnostic delay of nearly six years from the onset of symptoms. Six years of a disease progressing, organs being damaged, and a person being told what they are experiencing is something else entirely.

For Black women, that delay is often longer. And the consequences are often more severe.

Breaking the silence is not just meaningful. In many cases, it is lifesaving.

THE BEYOND THE GAME HEALTH PERSPECTIVE

Shamekka Marty did not build Beyond the Game Health despite her lupus diagnosis. She built it because of it.

Every community health screening BTGH runs at a sporting event. Every conversation about chronic illness that happens in a space where people would not normally expect to find it. Every athlete who feels seen, not just as a performer, but as a person with a body that deserves honest care and real support, is a direct expression of what it means to turn a difficult diagnosis into a platform for something larger.

This is Lupus Awareness Month. And at BTGH, awareness is not passive. It is not a purple ribbon or a social media post and nothing else. It is showing up in communities, at games, at events where real people are, and connecting them to real information, real resources, and real advocates who understand what they are living with.

Lupus does not take a month off. Neither do we.

CONCLUSION

Shannon Boxx competed through three Olympics with lupus before she told anyone outside her inner circle. Venus Williams played through years of debilitating fatigue before her diagnosis finally gave her an answer. And Shamekka Marty built an entire organization, one operating at the intersection of sports, health equity, and community advocacy, while navigating a lupus diagnosis, multiple surgeries, and a kidney transplant.

These are not stories about people who defeated lupus. Lupus does not work that way. These are stories about people who refused to let lupus be the last word. Who showed up anyway. Who used the platform they had, whether that was an Olympic podium or a community health event at a baseball stadium, to make sure the next person with a lupus diagnosis felt less alone and had better access to the care they deserve.

May is Lupus Awareness Month. If you know someone living with lupus, check in on them. If you are living with lupus yourself, know that you are not alone and that your story matters. And if you want to be part of the work, we are here.

That is what Beyond the Game Health was built for.

To learn more about lupus, visit the Lupus Foundation of America at lupus.org. To connect with Beyond the Game Health and our community health work, reach out, we would love to hear from you.