Community Empowerment: Sharing Stories to Inspire Genetic Health Awareness

Why I Speak Up

I share my story because silence has never protected our people.

In my family, in my community, too many health conversations happened too late or not at all. Not because we didn’t care, but because we were taught to push through, to carry on, to not ask questions unless something was already wrong.

I share my story to break that pattern.

Storytelling has always been how our culture passes down truth, warnings, strength, and survival. Before medical journals and diagnoses had our names in them, we used voice. We still do.

Our Stories Have Always Mattered

In Black communities, stories are not extras. They are how we teach, remember, and protect each other.

When it comes to hereditary conditions like hATTR amyloidosis, storytelling becomes more than expression. It becomes prevention. It becomes awareness. It becomes an invitation to ask better questions about family health history, genetics, and what we may be carrying forward.

Too many people think they are alone in this journey. Our stories prove otherwise.

Knowledge Can Be Protection

hATTR amyloidosis is not just a medical term. It is a genetic condition that affects families, often across generations.

Among people of West African descent, the V122I variant is more common than many realize. Knowing that matters. Not to cause fear, but to create agency.

When you understand what may live in your genes, you can make informed decisions for yourself and for the people you love. Knowledge does not create the risk. It gives you power over it

Your Voice Matters

This space exists to honor voices. Not polished ones. Real ones.

If you’ve been touched by hereditary amyloidosis, genetic uncertainty, or the weight of not knowing your family’s health history, your story belongs here.

Sharing does not require perfection. It requires honesty.

When one person speaks, it gives someone else permission to ask questions, to get tested, to advocate earlier, or simply to feel less alone.

That is how change begins. That is how we protect the next generation.

Where Community Meets Conversation

I use social media and community gatherings as places to listen, learn, and stay connected to real people, not just numbers or trends. These spaces allow conversations to happen openly, in ways that feel accessible and human.

For many people navigating hereditary amyloidosis or genetic uncertainty, online connection is often the first place they realize they are not alone. It becomes a bridge to information, shared experiences, and sometimes the confidence to ask harder questions or advocate earlier.

This work is not about visibility for visibility’s sake. It’s about creating spaces where voices are heard, stories are respected, and knowledge can move freely through the community. That is how awareness becomes action, and how community becomes care.