According to the American Heart Association, Transthyretin (trans-thy-re-tin) amyloid cardiomyopathy (ATTR-CM) is an little-known disease of the heart where a protein called transthyretin that usually circulates in the bloodstream becomes “misshapen” and builds up in the heart, nerves, and other organs.
This can lead to amyloid deposits in the heart, making it less able to pump blood out, which can lead to heart failure and death. A variant of hereditary ATTR-CM is seen more in individuals of African descent. According to both the Cleveland Clinic and the American Heart Association, an estimated one in 25 African Americans are at risk for carrying the TTR gene responsible for hereditary ATTR-CM.
Symptoms, according to Pfizer’s webpage entitled “Understanding This Rare Disease Called ATTR Amyloidosis,” include:
- Fatigue
- Leg, ankle, or abdominal swelling
- Shortness of breath with activity
- Sudden drop in blood pressure upon standing
- Trouble breathing when lying down
- Irregular heart beat (arrhythmia)
For hereditary ATTR-CM risk factors include, but are not limited to, a family member with ATTR-CM or heart failure; being age 50 and older; gender, with patients being primarily male; and being African American.
According to Maat, “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. Share all your health information with your doctor so that they can ‘connect the dots’ and make sure health concerns aren’t overlooked.”
Education is critical in the diagnosis and treatment of this disease, which is why an upcoming event about ATTR-CM is so critical. On February 18, 2024, a virtual event to bring awareness of the disease will be moderated by Monifa Maat, director of community health initiatives and special populations at the Addo Foundation, along with a presentation led by heart specialist Dr. Jannae White; a nurse practitioner at the Ascension St. Agnes Heart Failure Center; and Velma Henderson, a patient living with ATTR-CM.
The event is sponsored by Pfizer in partnership with the Addo Foundation as part of their Voices for the Heart, which is dedicated to raising awareness about the disease, warning signs, and overall education. The event is open to the public. To register, use this link: https://zoom.us/webinar/register/WN_ipc9AtJcR2ut7aWhQ8sf_w#/registration.
For additional resources about hereditary ATTR-CM, you can visit www.voicesfotheheart.com.