Get to the Heart of the Matter With Early ATTR-CM Diagnosis in the Black Community 

Former NBA player and coach Don Chaney was diagnosed with the hereditary form of a rare, life-threatening condition of ATTR-CM. Chaney spoke during the virtual event about his symptoms and life-changing (and saving) diagnosis.

 

Do you know what transthyretin amyloid cardiomyopathy (or ATTR-CM) is?

It’s a serious and often underdiagnosed condition that affects the heart and is associated with heart failure.

There are two sub-types of ATTR-CM: wild-type and hereditary. Hereditary ATTR-CM, unfortunately, disproportionately impacts Black, African American, and Afro-Caribbean communities in comparison to other racial and ethnic groups. Even more alarmingly, the most common gene mutation associated with hereditary ATTR-CM in the US, V122I, is found almost entirely in African Americans and 3% to 4% of African Americans have this mutation – though not all carriers will develop ATTR-CM.

Heart-related ATTR-CM symptoms include:

  • Irregular heartbeat
  • Fatigue
  • Shortness of breath
  • Swelling in lower legs and feet

Other ATTR-CM signs and symptoms include:

  • Bilateral carpal tunnel syndrome
  • Pain or numbness in the lower back or legs
  • Eye disorders, such as glaucoma

“The health of a community is often about connecting. Connecting with our neighbors, friends, and family to recharge our souls,” Nettie Riddick, president of, Detroit Black Nurses Association, Inc., told the Michigan Chronicle previously.

“ATTR-CM gets worse over time, which is why early diagnosis and management are so important,” Riddick said.

To spread more awareness, Voices For The Heart – National Black Nurses Association | Detroit, organization held a late September virtual discussion to share how getting diagnosed with ATTR-CM can take years because of sometimes unrelated symptoms that appear like carpal tunnel syndrome, extreme tiredness, and swelling in the lower legs and feet, which can imitate other conditions.

The Detroit Black Nurses’ Association (DBNA) is a non-profit organization created to address the health needs of the minority community. The DBNA is one of 95 chapters of the National Black Nurses Association (NBNA).

During the roughly hour-long event, Dr. Brittany Fuller, intervention cardiologist at Henry Ford Health, shared how the event (an initiative through Pfizer) is targeting minority communities throughout the United States to let them know that preventative assistance is available.

“Early diagnosis is critical,” she said of the condition that “gets worse over time.”

“It is often missed,” she said. “It is very, very important … to talk to a doctor to discuss any symptoms (talked about today) even if you don’t think it’s related to heart failure.”

Fuller added that also people who experience heart failure symptoms should speak with their doctors, who could correct them and take action to find a proper diagnosis if patients have undiagnosed ATTR-CM.

Hereditary ATTR-CM is passed down from a relative and is caused by a change (or “mutation”) in one of your genes. In the United States, the most common mutation that causes hereditary ATTR-CM (V122I) is found almost exclusively in African Americans.

“The signs of ATTR-CM may be difficult to connect with a heart condition. ATTR-CM, as a cause of heart failure, can be missed. Family or friends can play an important role in helping you or your doctor determine health issues that you may not notice or talk about,” Riddick said. “Share all your health information with your doctor so that they can “connect the dots” and make sure health concerns aren’t overlooked.”

Former NBA player and coach Don Chaney was diagnosed with the hereditary form of a rare, life-threatening condition of ATTR-CM. Chaney spoke during the virtual event about his symptoms and life-changing (and saving) diagnosis.

“A few years ago, I started seeing a cardiologist for some heart-related symptoms, like fatigue, palpitations, and shortness of breath,” Chaney said. “I was taking medicine for my palpitations as prescribed, but it was only making me feel worse. And because my mom and grandmother both passed away from heart disease, I was worried that I may be facing the same issues as them. I underwent several tests and procedures to figure out what was going on, which is how I found out I had heart failure.”

Chaney, who experienced joint pain and carpal tunnel syndrome, said that he never imagined those would tie to his heart condition, especially because his extensive career in sports could have caused those very symptoms.

“After I was diagnosed with ATTR-CM, my doctor strongly recommended genetic testing and counseling to find out which type of the disease I had,” he said. “Once it was confirmed that I had the hereditary form of ATTR-CM, I spoke with my three adult children, sisters, and brothers about getting tested to see whether or not they also have the gene mutation that causes the disease.”

Chaney said that “we are connected by our health histories.”

“Sharing health information among relatives is important too,” he said. “If you have relatives with heart-related issues – tell your doctor. If a relative is diagnosed with hereditary ATTR-CM, a doctor may suggest genetic counseling and testing for relatives. Genetic testing can help relatives understand what potential steps to take.”

For resources or more information on hereditary ATTR-CM, including a discussion guide to assist in conversations with a doctor, visit www.yourheartsmessage.com/don.

 

 

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