By Jonathan L. Dotson
March is recognized as Amyloidosis Awareness Month, yet for many in the Black community, this disease remains largely unknown—until it is too late.
Amyloidosis is a rare but serious condition caused by abnormal protein deposits that can damage vital organs such as the heart, kidneys and nervous system. While it may be classified as “rare,” its impact in the Black community is disproportionately significant, particularly in its hereditary form. Despite this, awareness remains low, diagnoses are often delayed and too many families are left navigating this journey without the information or support they need.
This is not just a medical issue—it is a health equity issue.
Far too often, symptoms of amyloidosis are misdiagnosed or dismissed. Fatigue, swelling, shortness of breath and nerve pain are frequently attributed to more common conditions. As a result, individuals can spend years seeking answers while the disease silently progresses. By the time a correct diagnosis is made, treatment options may be limited and the emotional, physical, and financial toll on families can be overwhelming.
Through our work at Friendship That Gives, we have seen firsthand how this disease impacts not only individuals but entire families. Caregivers—many of whom are spouses, children or close relatives—are often the unsung heroes in this journey. They manage appointments, medications, emotional support, and daily care, all while carrying their own mental and physical burdens.
Yet, their stories are rarely told.
Caregiving in the Black community often happens quietly. There is a cultural expectation of strength and resilience, but that strength can sometimes come at the cost of silence. Many caregivers do not seek help, do not have access to resources, and do not feel seen. This lack of visibility contributes to burnout, stress and mental health challenges that ripple throughout families and communities.
We must change that narrative.
Awareness is the first step. We must begin having open and honest conversations about amyloidosis—what it is, who it affects and why early detection matters. Families should feel empowered to ask questions, seek second opinions and advocate for comprehensive testing when symptoms persist without clear answers.
Healthcare providers must also be part of this conversation. Cultural competency, improved diagnostic training and increased awareness of how diseases like amyloidosis present in Black patients are critical to closing the gap in care.
But awareness alone is not enough.
We must also build systems of support.
At Friendship That Gives, our Fashionably Healthy Empowerment Series – Community Conversations was created to meet this very need. We are bringing together medical professionals, caregivers, patients and community leaders to create safe spaces for education, dialogue and connection. These conversations are designed to break the silence, provide resources and remind individuals and families that they are not alone.
Because no one should have to navigate a life-altering diagnosis in isolation.
This work also extends beyond physical health. The emotional and mental health impact of chronic illness—both for patients and caregivers—cannot be ignored. Anxiety, depression and stress are often part of the journey, yet mental health remains stigmatized in many communities of color. Addressing amyloidosis must include addressing the whole person—mind, body and spirit.
As we recognize Amyloidosis Awareness Month, let this be more than a moment. Let it be a movement.
A movement toward earlier diagnosis.
A movement toward informed advocacy.
A movement toward stronger support systems.
And most importantly, a movement toward health equity.
To every family navigating this journey: you are seen, you are heard, and you are not alone.
And to our community: now is the time to ask questions, to seek knowledge, and to stand together in awareness and action.
Because awareness can save lives—and in our community, it must.
The opinions expressed in this commentary are those of the writer and not necessarily those of the AFRO.