Raising Awareness of a Serious Heart Condition in Black/African American, Afro-Caribbean Communities

Listen to Your Heart: Raising Awareness of a Serious Heart Condition in Black/African American and Afro-Caribbean Communities

More than a year and a half into a global pandemic that has disproportionately impacted communities of color, we continue to live through a public health tragedy. If there is any hope to be drawn from so much hardship and loss, it’s that COVID-19 has reignited new conversations about disease awareness and the inequality that still exists in our healthcare system.

As a kidney transplant surgeon and urologist practicing in Cleveland and northeast Ohio for nearly 30 years, with expertise in areas of health disparities and health equity in minority populations, I’ve witnessed how delayed patient office visits can impact care within our community. It is crucial that we continue to work to raise awareness among both physicians and patients on diseases that disproportionately affect communities of color.

That’s why there is one condition I want every heart failure patient to be aware of. It’s called transthyretin amyloid cardiomyopathy, or ATTR-CM. ATTR-CM is a serious and often underdiagnosed cause of heart failure.

ATTR-CM is a progressive disease, in which over time the heart muscle begins to thicken and stiffen. There are two types of ATTR-CM; the wild-type, which is associated with aging, and the hereditary type, which is associated with a gene change (mutation) and can be passed down from a relative. The most common mutation in the United States, known as V122I, is found almost exclusively in African Americans. Approximately 3% to 4% of African Americans are thought to have the V122I mutation, although not all individuals with the V122I mutation develop symptoms of hereditary ATTR-CM.

While heart failure is common among Black/African Americans and associated with Afro-Caribbean communities, hereditary ATTR-CM in these populations is often overlooked by doctors for several reasons. In fact, some patients with ATTR-CM say they visited up to five doctors before receiving an accurate diagnosis.

This is why I am excited to be partnering with Pfizer in Cleveland on Voices for the Heart - a community-based initiative bringing together physicians and trusted local organizations within Black/African American and Afro-Caribbean communities around the country to increase awareness of hereditary ATTR-CM as an often-underdiagnosed cause of heart failure.

Early signs of ATTR-CM can include an irregular heartbeat, fatigue, shortness of breath, carpal tunnel syndrome, swelling in the hands and feet, and numbness and tingling in the hands. Some of these symptoms are not traditionally associated with heart disease, which may contribute to multiple doctor’s appointments and a delayed or incorrect diagnosis.

I’m committed to spreading awareness of hereditary ATTR-CM because I have seen firsthand how a delayed diagnosis can adversely impact a patient (and their loved ones), making it essential