Potentially fatal genetic heart condition subject of recent forum
14th February 2023 · 0 Comments
By Ryan Whirty
Contributing Writer
The dangers and treatment of an often overlooked, and often fatal, genetic heart condition that afflicts people of color were discussed at a community forum recently.
The online seminar, held on January 25, about hereditary transthyretin amyloid cardiomyopathy (ATTR-CM) was hosted by New Hope Baptist Church in Central City and sponsored by the National Newspaper Publishers Association, a network of more than 200 Black-owned community newspapers across the country.
The workshop came as part of the NNPA’s ongoing “Voices for the Heart” series of similar events aimed at educating the public about ATTR-CM, one type of which disproportionately impacts African-Americans and people of color from the Caribbean. The series is also sponsored by Pfizer pharmaceutical company.
The particular strain of ATTR-CM, while somewhat rare, is largely genetic, meaning people of color who do have it frequently don’t even know it’s in them until heart problems arise, said Dr. Albert Hicks, a medical consultant with Pfizer. He said if the ATTR-CM gene mutation is left undiagnosed or untreated, it can cause heart failure, with symptoms like an irregular heartbeat, fatigue, shortness of breath and swollen extremities.
Biochemically, he said, the genetic mutation causes proteins in the blood to get tangled and bunched up, to the point that it affects the heart’s ability to pump blood throughout the body. These tangled proteins can be found all through someone’s body.
Hicks said cases of heart failure, including those triggered by ATTR-CM, often are very slow to develop and can start to seriously affect people in their 50s and 60s. He added that the symptoms worsen over time, and anyone showing any signs of heart failure should talk to a doctor, who could first move to test for ATTR-CM.
“The more you tell your doctor,” he said, “the more they can do to help you understand the condition.”
Hicks said the gene mutation is passed down from generation to generation, and both Black men and Black women are affected. However, he added, not everyone who has ATTR-CM develops heart failure or corresponding symptoms. He said that this potentially devastating condition of ATTR-CM can eventually exacerbate pre-existing health conditions, but that ATTR-CM-related heart problems cannot themselves cause ATTR-CM. The condition is only caused by genetics, not lifestyle choices.
The Jan. 25 online workshop also featured comments from Randolph Peters, a professor at Dillard University who lives in New Orleans and has ATTR-CM. Peters, who is 76, said he was diagnosed two years ago and has since been dedicated to getting the word out about the condition.
Peters, a native of Trinidad and Tobago but now a long-time resident of New Orleans, said the first symptoms triggered by ATTR-CM that he experienced was carpal tunnel syndrome and tingling in his hands and feet. For him, heart failure and the presence of ATTR-CM were both diagnosed in the emergency room to which he went to address the symptoms in his extremities.
“I didn’t know I was living with heart failure,” Peters said.
He said that at the time, he was seeing five different doctors to treat his various symptoms but that no one connected the dots until his ER visit. Peters said he was completely unfamiliar with ATTR-CM when he first learned he had it.
“I was flabbergasted,” Peters said. “I had been fit all of my life, so [the diagnosis] came as a total shock to me.”
He urged any people who have any of the signs and unresolved symptoms of heart failure to see a doctor, especially if heart failure and other cardiac ailments run in their family.
“[You should] have a heart-to-heart conversation with your doctor,” he said, no pun intended.
Today, Peters added, he works with his wife and doctor to mitigate and negate the effects of ATTR-CM, including closely watching his diet. As a result of his ongoing treatment, he spends time with loved ones and still enjoys his hobbies, including riding his motorcycle, even though he’s 76.
Hicks stressed that ATTR-CM is relatively rare – less than 200,000 Americans, or three to five percent of the Black population, are affected by it – he underscored the importance of recognizing and reporting any symptoms of heart failure, because if someone does have ATTR-CM the results can be devastating.
He also noted that the presence of ATTR-CM is completely unrelated to any lifestyle choice; healthy habits and practices can’t prevent it, and poor habits won’t cause ATTR-CM. It’s entirely genetic. All someone can do is manage and monitor it. As a result, he added, “it’s important to find it early.”
Hicks added that undiagnosed ATTR-CM is one of many health conditions that disproportionately affect communities of color, largely because symptoms are ignored or unrecognized and exacerbated by a lack of access to adequate health care. He said such health disparities between people of color and other ethnicities can be closed or narrowed through education, access and vigilance.
