More Than A Diagnosis: Genny Mack on Living, Advocating, and Thriving With Lupus

For Genny Mack, lupus was never just a word on a medical chart. It was a shadow that has always been there. Growing up, she saw firsthand what it meant to live with a chronic, unpredictable disease. “Lupus was always a question mark, because my mom has lupus,” Genny shares. But her mother’s approach was shaped by a different time and a different mindset. “She’s a classic example of sort of the ancestral lineage that came before me, that taught, you just deal with the disease. She doesn’t talk much about it. She just lives, and she takes her medication.” That quiet endurance is familiar in many Black families. Genny saw the limits of silence and resignation. She wanted something more, not just for herself but for everyone who comes after.

Living With Lupus: Beyond the Diagnosis

Genny was officially diagnosed around age 30, but the warning signs started years before. “Drastic weight loss. That’s what happened to me. Some people have drastic weight gain from the medication, the steroids, for example.” She has experienced all of it: unpredictable flares ups, long hospitalizations, fatigue that can wipe out a week, and the constant calculations about what her body will or will not allow. “Just learning how to move the body again, you know, being bedridden can be a terrible, terrible day.” She also pointed out the emotional burden. “We have to be that strong Black woman. And we often don’t have the healthcare system supporting us.” 

The general public still does not know alot about the disease. Well, here are some facts:

• Lupus affects Black women at two to three times the rate of white women. They often develop it at a younger age and with more severe symptoms. ¹
• Lupus is one of the leading causes of death among young women of color. ²
• Up to 25 percent of people with lupus are hospitalized every year, sometimes for weeks at a time. ³
• Black women remain underrepresented in lupus clinical trials and research. This leads to gaps in care, treatment, and understanding. ⁴

Genny charted her own path with the disease. She has become an advocate, organizing a support group called The Lupus Connection and speaking up for Black women who are too often dismissed by healthcare providers while not realizing their power within. “My life’s work is to educate people on lupus, but also show people that you can live a full life with lupus,” she says. Genny also feels that it is important that people are aware of other options like clinical trials that may be available.  “We’re not involved in those clinical trials and studies and we should be” 

Genny is rewriting what is possible by seeking answers, building community, and demanding better from every corner of the healthcare system. She is showing us that you do not have to accept what you inherited—you can ask more, expect more, and create change for yourself and others. Her journey is not just about survival. It is about taking the power back, standing up, and inspiring a new generation to speak up, show up, and claim the future they deserve. To learn more about Genny Mack and her advocacy visit gennymack.com For science-backed facts and helpful resources on lupus, visit lupus.org.

If you or someone you love is living with lupus, consider joining a clinical trial. Participation is not just about taking a study drug. It is about making sure Black women’s experiences count and drive the science forward.

Learn more about a current lupus clinical trial and how you may be able to get involved:

CLICK HERE

Let’s change what is possible for ourselves, and the next generation.