By Stacy M. Brown, NNPA Newswire Senior National Correspondent @StacyBrownMedia
If you ask non-medical professionals about the different heart disease forms, many probably could rattle off conditions like congenital heart defects and coronary artery disease.
Very few are likely to mention Transthyretin amyloid cardiomyopathy – or ATTR-CM.
That is why Pfizer Rare Disease has prioritized educating the African American community at-large about the rarest of heart diseases.
The pharmaceutical giant has enjoyed a long-standing partnership with the National Newspaper Publishers Association (NNPA). Together, the organizations have worked to address and raise awareness about ATTR-CM and other rare diseases.
Pfizer representatives plan to discuss ATTR-CM during the NNPA’s annual Midwinter Training Conference, which commences on Thursday, January 28.
The two-day virtual conference, which features workshops and panels, will stream over http://www.virtualnnpa2021.com and the Black Press of America’s social media platforms.
ATTR-CM is a life-threatening, underdiagnosed type of cardiac amyloidosis associated with heart failure. It disproportionately affects African Americans.
Often ATTR-CM is diagnosed after symptoms have become severe.
The unstable, misfolded proteins can build up in the heart and other parts of the body, causing the heart muscle to stiffen over time, eventually leading to heart failure.
Awareness of ATTR-CM is also low within the physician community, and as a result, “continues to be significantly underdiagnosed,” Pfizer officials noted in a statement on its website.
“This is a rare disease that mimics heart failure and, if it goes unattended or undiagnosed, it can be fatal,” NBA Legend Don Chaney told NNPA Newswire.
“It can affect the heart, nerves, and different tissues in the body. You have to get treatment and medication as soon as possible, and I speak with my cardiologist all of the time.”
Chaney, 74, was diagnosed in 2019 after his cardiologist told him that he had the hereditary form of ATTR-CM, which meant that it was passed down to him from a relative, and he could pass it down to his children.
The other form of the disease is Wild-type ATTR – also known as senile amyloidosis – that isn’t caused by mutation and develops in older adults, usually 65 and over.
“I started seeing a cardiologist for some heart-related symptoms, like fatigue, palpitations, and shortness of breath,” Chaney recalled in a December interview with NNPA Newswire.
“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 might be facing the same issues as them.”
Chaney underwent several tests and procedures, and doctors discovered he had heart failure. Initially, he brushed aside the symptoms of ATTR-CM, including swollen knees, ankles, and feet.
After all, Chaney had played about a dozen years of pro basketball.
“I didn’t think to mention them as part of my medical history when I started having heart problems, but I wish I had,” Chaney recounted. “It turns out; some were early signs and symptoms of this rare heart condition called ATTR-CM.”
Until recently, Pfizer officials have noted that there were no medicines approved for the treatment of ATTR-CM.
Historically, management options were limited to symptom management, and in rare cases, heart or heart and liver transplant, Pfizer officials said, noting that education, awareness, and treatment are critical to improving the diagnosis and care of people affected by ATTR-CM.
According to Pfizer’s information, once ATTR-CM is suspected, a doctor will rule out another form of cardiac amyloidosis — known as light chain amyloidosis (AL) — by assessing blood and urine tests.
“This is an important step, as AL amyloidosis and ATTR-CM have a very different clinical course,” Pfizer officials stated.
After ruling out AL amyloidosis, a doctor may utilize non-invasive nuclear scintigraphy, a cardiac biopsy, or both to confirm ATTR-CM diagnosis.
When ATTR-CM is diagnosed, genetic counseling and testing are recommended.
Genetic testing can help confirm or rule out ATTR, which may have implications for the patient and their family members.
Genetic tests typically use a blood or saliva sample.
“We have to talk to our doctors, tell them everything even if we don’t think it’s important,” Chaney proclaimed.
“There is a history of distrust in medicine as African Americans, but this is so important that we ask questions and be open with our doctors. You want to separate yourself. I am not just a person with heart disease, but rare heart disease.”
Learn more about ATTR-CM at the NNPA’s Midwinter Training Conference. The conference is free, but registration is encouraged, visit http://www.virtualnnpa2021.com.