In a room filled with testimony, urgency and truth, one message echoed louder than the rest: Listen to your body – and fight to be heard.
At a recent community forum led by Rev. Corine Mack, president of the Charlotte Mecklenburg NAACP, residents gathered to confront a disease many had never fully understood, yet far too many had experienced firsthand – multiple myeloma, a rare but deadly blood cancer disproportionately affecting Black communities.
Multiple myeloma is a cancer that forms in plasma cells, a type of white blood cell found in bone marrow. While considered relatively rare, Black individuals are twice as likely to be diagnosed with the disease compared to their white counterparts.
Tuesday, Rev. Mack emphasized a critical concern: early symptoms are often dismissed. “People think it’s just back pain. They think they overworked themselves. But that’s how it starts.”
At a 2025 gathering at Little Rock AME Zion Church, more than 20 individuals stood to share their experiences with the disease, with many recounting nearly identical beginnings: persistent back pain, fatigue, or leg aches that were initially ignored or misdiagnosed.
For Beverly Kerr, a health educator of over 20 years, the journey to diagnosis was marked by persistence, pain, and spiritual grounding.
Her symptoms, she said Tuesday, began after contracting COVID-19 in 2021. What followed was a slow decline – anemia, severe back pain and a burning sensation along her spine. Despite repeated visits to healthcare providers, she says her concerns were dismissed. “I kept pressing my doctor to listen to me,” she said.
It wasn’t until a visit to the emergency room, and a follow-up with a different nurse practitioner, that the truth surfaced: tumors, bone lesions, and a fractured rib caused by cancer weakening her bones.
“I wasn’t thinking about myself,” Kerr recalled. “I was thinking about how many others are ignored and silenced.”
Her diagnosis marked the beginning of an intense treatment journey, including chemotherapy complications, removal of eight tumors, and a stem cell transplant at the Mayo Clinic. Today, she is two years in remission. But survival came at a cost.
Treatment for multiple myeloma is not only physically demanding, it is financially and emotionally taxing.
Kerr said her maintenance medication costs $21,000 every 28 days, with total treatment expenses exceeding $100,000.
The aftermath of treatment includes weakened immune system requiring full revaccination, chronic fatigue and neuropathy, ongoing kidney monitoring, increased risk of relapse, and emotional isolation and mental health strain
“You don’t look like what you’re going through,” she said. “And the weight of explaining it to people is a burden.”
Underlying many of the testimonies was a deeper issue: medical bias.
Rev. Mack pointed to longstanding disparities in healthcare, including the harmful belief that Black patients can tolerate more pain, leading to delayed diagnoses and inadequate care.
“It is your responsibility to advocate for yourself first,” she said. “And someone like myself will be the second person to advocate for you.”
This call to action is especially urgent for Black men, who Mack noted are often reluctant to seek medical care, even when symptoms are severe.
While multiple myeloma is typically diagnosed around age 69, community observations suggest a troubling shift: More new patients are younger.
Mack said environmental studies are exploring potential links to water quality, housing conditions and food systems, raising broader questions about systemic exposure and long-term health risks.
Early symptoms of multiple myeloma may include persistent back or bone pain, extreme fatigue, anemia, balance issues, unexplained fractures and frequent infections.
Experts and survivors alike stress the importance of routine lab work and understanding your baseline health starting in your 30s.
“Your labs are so critical,” Kerr said. “Make sure your provider actually goes through them with you.”