The Heart of Community: The Importance of Discussing Hereditary Heart Conditions with Our Loved Ones

By Randy Peters

Everyone has heard the advice to “listen to your heart.” This holds true especially when it comes to heart conditions like hereditary transthyretin amyloid cardiomyopathy (or hATTR-CM). It took years for me to get diagnosed. My body was telling me something was off – but at the time, I didn’t listen to it. Also, some doctors are not familiar with the disease. I saw six doctors before I was finally diagnosed with hATTR-CM – and my experience is not unusual. That’s why I’m so passionate about sharing my story.

My symptoms started four years before I was diagnosed. I was experiencing shortness of breath during my routine jogs. I also developed carpal tunnel syndrome (a condition that causes numbness, tingling, or weakness in the fingers), which was diagnosed by my primary care doctor, but I thought it was the result of my days as a college professor. We didn’t discuss ATTR-CM. I never imagined the carpal tunnel could be linked to the shortness of breath I was experiencing – and certainly not my heart.

One day, as my daughter watched me struggle to make it up the stairs, she insisted I go to the emergency room. A doctor there suggested I be tested for ATTR-CM and later I was diagnosed with ATTR-CM. Once I received my ATTR-CM diagnosis, I relied on my cardiologist for information. I also did a lot of my own research to stay informed.

I learned that there are two types of ATTR-CM – wild type and hereditary. Wild type is associated with aging, mostly affecting older white men. The hereditary type of the disease, which I was diagnosed with through genetic testing, is more prevalent in Black, African American and Afro-Caribbean communities. It can be passed down from one generation to the next through specific genes. About three to four percent of African Americans carry a mutation in the TTR gene (V122i) that makes it more likely they’ll develop hATTR-CM. However, not all people that have the mutation develop the disease. Also, ATTR-CM gets worse over time. That’s why early diagnosis and appropriate disease management strategies are so important.

I never knew how much my life would change the day I was diagnosed. I am grateful to have an amazing support system and community around me. I work closely with my doctor to manage my hereditary ATTR-CM. My wife Priscilla is a big part of my disease management, and she helps me tremendously. I’ve had to make some changes: I watch my diet and how much salt I eat, but I still enjoy many of the things I love, including woodworking and staying fit. I also found peace in discussing my diagnosis with my family. Now they know that with genetic testing and counseling, they have a chance to better understand their risk. It’s important to remember that if you have hereditary ATTR-CM, it is not your fault. It is caused by a change in the TTR gene, and not something you have done.

I hope my story will help other families get the right diagnosis and not have to go through what I did. This is why I am excited to be partnering with Pfizer on Voices for the Heart in New Orleans – a community-based event that teams up with local organizations within Black, African American, and Afro-Caribbean communities around the country dedicated to raising awareness of hATTR-CM as an often underdiagnosed cause of heart failure.

As part of the Voices for the Heart effort, I am a featured speaker that will appear at a virtual and in-person event on Saturday, August 5th at 10:00 AM CT. At the event, people can learn more about hATTR-CM symptoms and diagnosis, and there will be additional educational resources on hATTR-CM available. For additional information on the event, please visit www.voicesfortheheart.com.

Let’s work together to raise awareness of hATTR-CM among family members, friends, and neighbors and encourage those experiencing unresolved symptoms and with a history of heart failure to talk to their doctor.

 

For resources on hereditary ATTR-CM, including a discussion guide to help conversations with your doctor, you can visit www.voicesfortheheart.com.

DOWNLOAD VFTH New Orleans Event Flyer HERE

*A 7-year study in London, UK found a gene mutation (ATTR V122I) was the cause of heart failure in 211 out of 1392 Afro-Caribbean patients

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