An often-underdiagnosed cause of heart failure among Black/African Americans and Afro-Caribbeans is a medical condition called hereditary transthyretin amyloid cardiomyopathy (ATTR-CM). A virtual Pfizer-sponsored event which was hosted by Black Nurses of Southern Maryland was held on April 28, 2022, to provide educational information about it. The “Voices for the Heart” program was intended to raise awareness about the occurrence of ATTR-CM in the minority populations noted above.

“Amyloidosis is a group of conditions in which certain proteins change shape, or misfold. These proteins can build up in different parts of the body. Over time, when these misfolded proteins build up in your heart, it may lead to ATTR-CM, or transthyretin amyloid cardiomyopathy, a very serious type of amyloidosis that affects the heart,” Dr. Carlos Ince explained, during the online presentation. “There are two main types, wild-type and hereditary. Hereditary ATTR-CM typically affects the Black/African American and African Afro-Caribbean communities, more so than the general population, but it’s often never identified as ATTR-CM, and that is why we are getting the word out through this event.”

Ince works as St. Agnes Hospital’s Chief of Cardiology. He encouraged community members who have experienced heart failure, or symptoms, to speak with their doctor about ATTR-CM. Ince reminded that heart failure means that “the heart does not pump blood as well or as efficiently as it should.” He clarified that heart failure does not mean that the heart completely stops beating or pumping blood.

“Heart failure often develops after the heart muscle has been weakened or damaged. This can be due to a heart attack, and then very common in the African American community from high blood pressure,” Ince said. “But for example, there are a variety of other conditions that can affect the heart and can lead to heart failure as well. Heart failure often starts slowly and typically progresses over time.”

Ince cited an insightful review which was published in 2019.  He explained that the likelihood that African Americans will experience heart failure is one and a half times greater, when compared to “the general population.”

According to Ince, individuals who have ATTR-CM may experience symptoms such as an irregular heartbeat, leg swelling, extreme tiredness, and shortness of breath. However,bilateral carpal tunnel syndrome, numbness, or tingling or pain in the fingers are common AATR-CM symptoms.

“Incidentally, you can have eye disorders such as glaucoma. Also, folks can have pain or numbness in the lower back or legs from narrowing of the spine, such as lumbar spinal stenosis,” Ince said.

The heart expert also explained that genes may influence functionality of our bodies. Since genes are made of DNA that is inherited or passed down from their parents, a permanent DNA change that results in a gene mutation may also occur during a person’s lifetime.

“They often have no impact on health, but some mutations can lead to conditions such as hereditary ATTR-CM,” Ince said.

An electrocardiogram (EKG) is a test which is used to read electrical signals from the heart. It can reveal irregular heartbeat or atrial fibrillation. These signs may be linked to ATTR-CM.

Don Chaney— who is a former professional basketball player and coach— began to experience heart-related symptoms several years ago. A portion of his personal story was shared during the online event. Chaney currently raises awareness about the health condition, after he was diagnosed with ATTR-CM in 2019. The public figure consulted his heart doctor because heart disease ran in his family.

“My cardiologist ran some tests, but the cause of my heart failure was still unclear. For years, I had experienced carpal tunnel syndrome, knee pain, and swelling in my lower legs and feet, but I simply chalked these up to my years on the court,” Chaney said via information provided by . “I didn’t think to mention them as part of my medical history when I started having heart problems, but I wish I had. It turns out, some were early signs and symptoms of this rare heart condition called ATTR-CM.”

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