For seven years, Erika Reyna was told some version of the same thing.
You’re a new mom.
You’re breastfeeding.
You’re stressed.
You’re doing too much.
Erika’s reports of worsening symptoms were continually written off as essentially anything but an actual medical condition.
Today, far from being dismissed, Erika’s voice is helping drive change.
As a lupus advocate, social media educator, member of the Lupus Research Alliance’s Patient Advocates for Lupus Studies (PALS) program, and a representative on the Lupus Voices Council of the Lupus Accelerating Breakthroughs Consortium (Lupus ABC), she helps ensure that the experiences of people living with lupus are listened to and considered from the earliest stages of research and drug development.
What once felt like years of going unheard has become a mission to help others be listened to.
Seven Years Searching for Answers
Erika’s symptoms began shortly after the birth of her first child. Starting with fatigue and dizziness, her symptoms expanded to include severe joint pain, hair loss, recurrent illnesses, numbness, and episodes that left her feeling as though she might faint.
Although she repeatedly sought medical care, her concerns were still attributed to the demands of motherhood, stress, weight, or other unrelated issues. Yet life continued. During those seven years, she had two more children, started graduate school, and did everything she could to keep moving forward despite feeling increasingly unwell.
Eventually the situation became impossible to ignore.
“I almost drove off the road one time because I was so exhausted,” Erika recalled.
The breakthrough finally came when an endocrinologist noticed signs of inflammation and screened for autoimmune disease; a rheumatologist later confirmed it was lupus.
Instead of devastation, Erika felt relief.
“I was just relieved to know that I’m not making it up. I’m not crazy. Now I can have a plan.”
Finding Purpose Through Advocacy
Not letting lupus define her future, Erika began looking for ways to make a difference.
She found that opportunity through the Lupus Research Alliance, where she learned to advocate for lupus research funding. Public speaking had never been her comfort zone, but advocacy gave her something she desperately needed: a sense of purpose and control.
After meeting with congressional representatives to support federal lupus research funding, Erika saw firsthand the power of speaking out when the legislation passed, helping secure millions of dollars for lupus research. Seeing how patient voices could contribute to broader efforts to advance research and policy showed Erika that her story could have an impact beyond her own diagnosis. What began as a way to make her own experience heard became a commitment to ensuring patients have a meaningful role in the decisions that affect their lives.
Bringing the Patient Voice to the Table
Today, Erika serves on the Lupus Voices Council of the Lupus Accelerating Breakthroughs Consortium (Lupus ABC), where she works alongside researchers, clinicians, industry leaders, and FDA representatives to ensure the realities of living with lupus are represented throughout the drug development process.
“It’s amazing to have our patient voice embedded into research from the very beginning,” she said. “There’s a big difference between asking patients what they think after decisions are already made and bringing them into the conversation early enough to help shape those decisions.”
She often reminds researchers that lab results tell only part of the story.
“The labs may look great, but that doesn’t mean much to us if we’re not feeling great. We still have to be moms, go to work, go to school, and live our lives.”
Turning Experience into Hope
Even while managing lupus and raising three teenagers, Erika also shares her story on social media to help others recognize symptoms that may otherwise be overlooked.
She is particularly passionate about raising awareness among communities disproportionately affected by lupus and helping people recognize symptoms that can too easily be dismissed or overlooked.
In 2026, Erika brought that commitment to her own community by spearheading a San Antonio Autoimmune Awareness Month initiative. She wanted autoimmune disease to be visible throughout the city and hoped that people who saw the campaign might recognize themselves, their loved ones, or their own experiences in its message. Her efforts resulted in an official city proclamation and landmarks across San Antonio being illuminated, creating highly visible reminders of the millions of people living with autoimmune disease.
She brings that same commitment to her online advocacy. During Hispanic Heritage Month, for example, Erika uses her platform to educate her audience about lupus symptoms and encourage those experiencing them to seek answers.
“I always think, if I help one person, that’s enough,” she said. “Maybe their diagnosis time will be shorter than mine was.”
Most of all, Erika wants others to know that their experiences matter.
“Your lived experience is expertise,” she said. “You’re an expert in your own illness.”
For Erika, advocacy began as a way to regain control of her own life. Today, it has become something much bigger: a commitment to ensuring that no one living with lupus feels invisible, unheard, or alone.
Tags: Patient Advocates for Lupus Studies, PALS, Lupus Accelerating Breakthroughs Consortium, Erika Reyna, Community Spotlight, Lupus Voices Council