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

Do you know what ATTR-CM is?

It is a silent killer, primarily diagnosed in black people, that sometimes leads to devastating heart problems if not caught early.

Transthyretin amyloid cardiomyopathy, or ATTR-CM, is described as a serious and often underdiagnosed cause of heart failure.

Unfortunately, ATTR-CM disproportionately affects Black, African American, and Afro-Caribbean communities compared to other racial and ethnic groups. Even more troubling, approximately three to four percent of African-Americans have a mutation in the TTR gene (V122I), making it even more likely to develop ATTR-CM — although not all carriers develop the disease.

Heart-related symptoms of ATTR-CM include:

  • Irregular heartbeat
  • Fatigue
  • Dikhavitsa
  • Swelling of legs and feet

Other signs and symptoms of ATTR-CM include:

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

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

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

To raise awareness, Voices For The Heart – National Association of Black Nurses | Detroit, organization held a virtual discussion in late September to share how ATTR-CM can take years to diagnose due to sometimes unrelated symptoms such as carpal tunnel syndrome, extreme fatigue and swelling of the legs and feet that can mimic other diseases.

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

During the approximately hour-long event, Dr. Brittany Fuller, a cardiologist at Henry Ford Health, shared that the event (an initiative through Pfizer) is aimed at minority communities across the United States to let them know preventive care is available.

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

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

Fuller added that people experiencing symptoms of heart failure should also talk to their doctors, who can correct them and take steps to find the right diagnosis if patients are not diagnosed with 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 causing hereditary ATTR-CM (V122I) occurs almost exclusively in African Americans.

“The symptoms of ATTR-CM can be difficult to associate with heart disease. ATTR-CM as a cause of heart failure may be missed. Family or friends can play an important role in helping you or your doctor identify health problems you may not be aware of or talking about,” Riddick said. “Share all of your health information with your doctor so they can ‘connect the dots’ and make sure health issues aren’t being overlooked.”

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

“A few years ago, I started seeing a cardiologist for some heart-related symptoms like fatigue, palpitations and shortness of breath,” Cheney said. “I took my heart palpitations medicine as prescribed, but it only made me feel worse. And since my mom and grandma both died of heart disease, I was worried that I might face the same problems they did. I went through several tests and procedures to find out what was going on, and that’s how I found out I had heart failure.’

Chaney, who has been experiencing joint pain and carpal tunnel syndrome, said he never imagined it could be related to his heart condition, especially since 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 what type of disease I had,” he said. “After it was confirmed that I have the hereditary form of ATTR-CM, I talked to my 3 grown children, my sisters and brothers about getting tested to see if they have the gene mutation that causes the condition” .

Cheney said that “we are connected by our health history.”

“Exchanging health information between relatives is also important,” he said. “If you have relatives with heart problems, inform the doctor. If a relative is diagnosed with hereditary ATTR-CM, the doctor may offer genetic counseling and testing to the relative. Genetic testing can help relatives understand what potential steps to take.”

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

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