We knew something was wrong, but no one had named it yet
A deeper first-person or family-centered story about noticing changes, searching for answers, and finally getting language for what had been happening all along.
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Millions of Black Americans may be living with a heart condition that goes undiagnosed until it’s too late
For too many Black families, symptoms get explained away, overlooked, or treated as something else for far too long. Heart to Heart exists to bring visibility to ATTR-CM, a serious but treatable heart condition connected to a genetic variant found almost exclusively in people of African descent.
This is about more than awareness. It is about helping people recognize what may have been missed, ask better questions, and feel more prepared to act sooner.
3 to 4% of Black Americans
carry the Val122Ile genetic variant linked to increased lifetime risk for ATTR-CM
Heart Disease
remains the leading cause of death for Black Americans
ATTR-CM
is often missed or diagnosed later than it should be
What is ATTR-CM?
ATTR-CM is acondition many people have never heard of, but many families may need to know about
ATTR-CM stands for transthyretin amyloid cardiomyopathy. It happens when a protein in the body becomes unstable, changes shape, and builds up in the heart. Over time, that buildup can make it harder for the heart to function the way it should.
For many people, especially those navigating a busy life, caregiving, work, or aging parents, the signs do not always stand out right away. What starts as fatigue, shortness of breath, or swelling can be mistaken for stress, aging, or another heart issue altogether.
That is part of the problem. Many people are living with symptoms and still do not have language for what they are experiencing. Heart to Heart is designed to help close that gap with information that is clear, grounded, and easier to act on.
It is also important to be clear about risk. Carrying the Val122Ile variant does not mean someone will definitely develop ATTR-CM. It means the risk may be higher, and that awareness, family conversations, and informed follow-up matter.
It starts with a protein
ATTR-CM begins when transthyretin, a protein made by the liver, becomes unstable and builds up in the heart.
Genetics can play a role
The Val122Ile variant is found almost exclusively in people of African descent and may raise lifetime risk.
The gap is often in diagnosis
Many people spend years trying to understand their symptoms before getting a clear answer.
By the numbers
The numbers point to a gap that deserves more attention
Too many people are at risk of learning about ATTR-CM late, after months or years of unanswered questions. This section should help visitors quickly understand why this conversation matters and why earlier awareness could make a meaningful difference.
3 to 4 %
3 to 4 percent of Black Americans carry the Val122Ile variant
1.3-1.5M
An estimated 1.3 to 1.5 million people in the United States may be carriers
>0.5%
Less than 0.5 percent of white Americans carry the same variant
ATTR-CM may account for a meaningful share of certain heart failure cases
Diagnosis delays can stretch across years
Earlier recognition can open the door to testing, specialist care, and treatment
Know the signs
When something feels off, it is worth paying attention
One of the hardest parts of ATTR-CM is that the symptoms can look like a lot of other things. They can feel easy to dismiss, especially when life is busy or when people have been taught to push through discomfort.
But patterns matter. If these symptoms keep showing up, worsen over time, or start affecting daily life, they may be worth discussing with a doctor.
1
Shortness of breath during everyday activity
2
Swelling in the legs, ankles, or feet
3
Dizziness or feeling faint
4
Difficulty with exercise or everyday movement that used to feel manageable
5
Irregular heartbeat or heart palpitations
6
Fatigue that feels persistent or unusual
Heart to Heart stories
Behind every delayed diagnosis is a real person, not just a statistic
We thought it was stress, age, or just a rough season
A shorter story about how symptoms can be minimized until they begin disrupting everyday life in undeniable ways.
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One conversation changed what we asked at the next appointment
A story that shows how information, advocacy, and the right question at the right time can shift a family’s next step.
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Take action
Awareness should lead to a next step people can actually take
If you are not sure where to begin, start by staying connected. Signing up for updates is a simple way to keep learning, hear real stories, and get helpful information you can come back to when you are ready.
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Start the conversation
Get guidance on how to talk with a parent, loved one, or doctor when symptoms, family history, or unanswered concerns are present.
Learn about genetic testing
Understand what genetic testing can help uncover, what it cannot confirm on its own, and why risk is not the same as diagnosis.
Find the right specialist
Learn what kind of heart specialist may be best equipped to evaluate possible ATTR-CM and help guide next steps.
Explore provider resources
Access medically grounded information that can support better screening, referral conversations, and informed decision-making.
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Keep learning with Heart to Heart updates
If this story feels close to home, you do not have to remember everything today. Sign up to receive helpful updates about ATTR-CM, stories from patients and families, and information that can help you know what to look for and what questions to ask.
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