President and CEO, Minority Health Institute, Inc.
As an experienced cardiologist who has treated Black people affected by heart disease for 50 years, I have the duty to inform you about a serious heart condition that impacts our community. Please read this information carefully. It may change your life – or the life of a loved one.
The condition is called transthyretin amyloid cardiomyopathy, or ATTR-CM. ATTR-CM is a serious and often underdiagnosed cause of heart failure.
ATTR-CM is a progressive disease, in which over time, the heart muscle begins to thicken and stiffen. There are two types of ATTR-CM; the wild-type which is associated with aging and the hereditary type which is associated with a gene change (mutation) and can be passed down from a relative. The most common mutation in the United States, known as V122I, is found almost exclusively in African Americans. Approximately 3% to 4% of African Americans are thought to have the V122I mutation, although not all individuals with the V122I mutation develop symptoms of hereditary ATTR-CM.
While heart failure is common among Black and African American communities, hereditary ATTR-CM in these populations is often overlooked by doctors for several reasons. In fact, some patients with ATTR-CM say they visited up to five doctors before receiving an accurate diagnosis. It is always upsetting when patients come to my office with advanced heart disease that could have been potentially diagnosed and treated earlier.
This is why I am excited to be partnering with Pfizer in Los Angeles on Voices for the Heart – a community-based initiative bringing together physicians and trusted local organizations within African American and Black communities around the country to increase awareness of ATTR-CM as an often-underdiagnosed cause of heart failure. A program like Voices for the Heart can be the essential piece between increasing awareness of hereditary ATTR-CM and providing help to patients to obtain an accurate diagnosis and treatment.
Early signs of ATTR-CM can include an irregular heartbeat, fatigue, shortness of breath, carpal tunnel syndrome, swelling in the hands and feet and numbness and tingling in the hands. Some of these symptoms are not traditionally associated with heart disease, which may contribute to multiple doctor’s appointments and a delayed or incorrect diagnosis.
I’m committed to spreading awareness of hereditary ATTR-CM because I have seen firsthand how a delayed diagnosis can adversely impact a patient (and their loved ones), making it essential to inform our community about this condition – including everyone from patients to caregivers to local healthcare providers.
If you’re experiencing seemingly unrelated signs and symptoms (e.g., irregular heartbeat, fatigue, shortness of breath or carpal tunnel syndrome) or have a family history of cardiac issues, and have been diagnosed with heart failure, talk to your primary care doctor or an experienced cardiologist. Whether they seem related or not, it’s important to share your symptoms and health history. This will allow your doctor to provide the care you need and to make an appropriate diagnosis.
As part of the Voices for the Heart effort, myself and former NBA basketball player and coach Don Chaney, a hereditary ATTR-CM patient himself, will be featured speakers at a virtual event led by the Minority Health Institute on November 3, 2021. Don will share his personal story of being diagnosed and living with hereditary ATTR-CM. I will share more information about hereditary ATTR-CM symptoms and diagnosis, and there will be additional educational resources on hereditary ATTR-CM available to the community. To register for the event, click here.
Working together, we can overcome the challenge of low awareness and raise our collective voices to help educate family members, friends, and neighbors at risk of developing hereditary ATTR-CM.
For resources on hereditary ATTR-CM, including a discussion guide to help conversations with your doctor, you can visit www.yourheartsmessage.com/don
Content developed by Pfizer in collaboration with Dr. Williams. Dr. Williams is a consultant on Pfizer’s Voices for the Heart program.
