Dr. Ola Akinboboye (cardiometabolichealth.org)

Black folks are more likely to be impacted by heart disease due to differences in blood pressure, body weight, access to health care, and numerous other social factors of health.

Because of this, Pfizer has been working with partners such as Voices for the Heart, an initiative raising awareness for a significant yet under-diagnosed illness that causes heart failure among Black communities.

 On Aug. 26, Pfizer held a virtual event in partnership with Voices for the Heart to discuss hereditary transthyretin amyloid cardiomyopathy, also referred to as ATTR-CM. ATTR-CM is a rare heart condition that affects Black people, African Americans and Afro-Caribbeans more than any other group.

Michelle Chambers moderated this event. The speaker was Dr. Ola Akinboboye, a medical director and a Clinical Professor of Cardiology at Donald and Barbara Zucker School of Medicine at Hofstra-Northwell. The final guest was Don Chaney, former NBA Hall of Famer and coach, who shared his experience with ATTR-CM.

Akinboboye was assisted in his presentation by an informative video that showed the audience what happens inside the body when it has ATTR-CM.

The average body makes various proteins every day to help it function. One of the many proteins made is called Transthyretin, termed TTR. Its purpose is to carry other substances through the bloodstream. In some people, TTR can misfold and tangle together. These Tangled TTR proteins in the heart cause the muscle walls to stiffen over time, which makes the heart unable to pump blood efficiently. Ultimately, it can make way for heart failure, according to the video.

ATTR-CM can cause many symptoms similar to heart failure, including fatigue, shallow breathing, irregular heartbeat, swollen legs, ankles, or feet, according to Akinboboye.

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“This condition can also affect the stomach or gut, leading to issues like diarrhea, constipation, feeling sick, having nausea, or feeling full quickly. Patients may have pain or numbness in their lower back or legs. A doctor may call this lumbar spinal stenosis,” Akinboboye said.

Other issues associated with ATTR-CM include glaucoma and tingling or pain in both hands or fingers. It’s one of the most common afflictions of ATTR-CM, according to Akinboboye.

There are two types of ATTR-CM: one is referred to as Wild-type ATTR-CM and the other is known as hereditary ATTR-CM. Hereditary ATTR-CM comes from a gene change or mutation passed down through relatives.

“Wild-type ATTR-CM most often affects Caucasian men by the age of 60. It is somewhat associated with aging. Hereditary ATTR-CM is the type that is most likely to affect the Black, African American and Afro-Caribbean communities. The symptoms can show up as early as 50 to 60 years old. It can affect both men and women,” Akinboboye said.

Throughout the virtual meeting, moderator Chambers made quick intermissions, allowing viewers to participate in ATTR-CM-based polling questions via their cell phones.

Participants were encouraged to speak with their healthcare provider if they related to any ATTR-CM warning signs. Or spread the word to people they know who might experience these symptoms so they can visit their doctors, too.

Don Chaney (File photo)

While having these symptoms may not mean one has ATTR-CM, Akinboboye stressed that it was essential to get diagnosed early, as it worsens over time. It is often mistaken for something else because the signs can appear unrelated to heart failure.

After speaking to a doctor about ATTR-CM, the doctor may recommend genetic tests to look for signs of ATTR-CM through the patient’s blood or saliva sample.

“If genetic tests confirm that you have the TTR gene change, your relatives may be at risk of developing ATTR-CM and should also consider genetic testing. People who get genetic tests should consider genetic counseling as recommended by their doctor,” Akinboboye said.

Genetic counseling ensures that the person understands their test results, the impact of the genetic information on them and their relatives, and the following steps to take, according to Akinboboye.

Towards the end of the discussion, Chaney joined to share his personal story with ATTR-CM.

In 2019, Chaney recalled being surprised when he was diagnosed with hereditary ATTR-CM after experiencing exhaustion, palpitations and shortness of breath. He was aware of his relatives who had a history of heart complications but never heard of his condition until his diagnosis. Because he went undiagnosed for a long time, he has made it his mission to share his story with others and help raise awareness of hereditary ATTR-CM.

“For about ten years, I also suffered from carpal tunnel syndrome, which is known as tingling pain in the fingers, knee pain and swelling in my knees and feet. But I assumed these were caused by my years of playing professional basketball,” Chaney said.

However, Chaney hasn’t let his ATTR-CM stop him from enjoying life. He now works closely with his cardiologist to manage his health and feels supported by his wife, Jackie.

Chaney stays active by spending time on his ranch and restoring antique cars. He takes his heart medicine and shared that he enjoys retirement surrounded by friends and family.

For more information about ATTR-CM and Don Chaney’s story, visit Voices for the Heart.com, as advised by Akinboboye.