Feeling tired all the time can seem like just another part of life, especially for Black Americans who often carry the compounded stresses of work, family, and systemic pressures. But when fatigue is paired with shortness of breath, swelling in the legs, or heart palpitations, it may signal something far more serious than just exhaustion: it could be heart failure. One specific and often overlooked type of heart failure, transthyretin amyloid cardiomyopathy (ATTR-CM), disproportionately affects Black patients but is widely underdiagnosed.
Understanding this disease—and knowing how to advocate for yourself—can literally save your life.
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Common Signs of ATTR-CM in Black Patients
ATTR-CM is a form of restrictive cardiomyopathy caused by a buildup of misfolded transthyretin proteins in the heart. Over time, this protein buildup stiffens the heart muscle, leading to heart failure. There are two types: hereditary (familial) ATTR-CM and wild-type (non-genetic) ATTR-CM.
Black patients are particularly at risk for the hereditary form, due to a specific genetic variant called V122I. About three to four percent Black Americans carry this genetic variant, according to research from the American Heart Association (AHA) (source).
Key ATTR-CM symptoms to watch for include:
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- Chronic fatigue: Feeling exhausted even after rest
- Shortness of breath: Especially during everyday activities
- Swelling: In the legs, ankles, or abdomen
- Carpal tunnel syndrome: Unexplained hand numbness or tingling
- Irregular heartbeat: Palpitations or feeling like your heart “skips” beats
- Unexplained weight loss: Even without changes in diet
Sadly, these symptoms often mimic “normal” aging or other common health issues, leading to misdiagnosis or delayed diagnosis.
RELATED: What Black folks Need To Know About ATTR-CM
Why This Diagnosis Is Missed in Primary Care
Primary care doctors are the first line of defense for most patients. Yet many are not trained to recognize the subtle signs of ATTR-CM, especially in Black patients.
Several factors contribute to this diagnostic gap:
- Symptom Overlap: Fatigue, swelling, and heart failure signs are easily attributed to hypertension, diabetes, or aging—all common among Black communities.
- Systemic Bias: Research shows that Black patients’ symptoms are more likely to be minimized or attributed to lifestyle factors rather than underlying disease (source).
- Lack of Genetic Testing: Primary care settings often don’t routinely screen for the V122I mutation unless a patient has already had a major cardiac event.
- Stereotyping: A deep-seated stereotype that Black people are “naturally stronger” or “less vulnerable” to certain illnesses sometimes causes critical symptoms to be overlooked.
Dr. Michelle Albert, current President of the American Heart Association and a prominent Black cardiologist, notes: “We have to move past assumptions and start investigating symptoms with the seriousness they deserve, especially when it comes to heart health in Black communities.”
New Awareness Campaigns and Clinical Tools
The good news is that efforts are underway to change this narrative. Several medical groups, advocacy organizations, and pharmaceutical companies have launched initiatives to raise awareness of ATTR-CM among Black Americans.
Association of Black Cardiologists (ABC)
The Association of Black Cardiologists has been leading efforts to educate both patients and healthcare providers on the racial disparities in heart failure diagnoses. They offer free webinars, downloadable resources, and patient advocates.
Updated Diagnostic Tools
There are now better diagnostic methods, like:
- Nuclear imaging: A non-invasive heart scan that can detect ATTR without needing a biopsy.
- Genetic testing: Saliva-based tests that can detect the V122I mutation quickly and easily.
Despite these advances, knowledge gaps persist. That’s why patients themselves—and their families—must often take the lead in asking for the right tests and referrals.
RELATED: 5 Key Challenges Facing Black Folks with ATTR-CM
How to Advocate for a Cardiac Referral
Being your own advocate in the healthcare system can be daunting, but it’s necessary, especially for conditions like ATTR-CM that require specialist input.
Here’s how you can push for the care you need:
1. Know the Signs and Speak Up
If you’re experiencing multiple ATTR-CM symptoms—fatigue, swelling, shortness of breath—bring a written list to your doctor. Clearly state your concerns, e.g.,
“I’m worried about heart failure. I know that Black patients can carry a genetic risk for ATTR-CM. Can we rule that out?”
2. Request Specific Tests
Ask your doctor directly about:
- Echocardiogram: An ultrasound of the heart to check function.
- Nuclear scintigraphy: A scan that can identify amyloid deposits.
- Genetic testing: Especially if you have a family history of heart problems or sudden death.
These requests show that you’re informed and serious, making it harder for your concerns to be brushed aside.
3. Ask for a Cardiologist Referral
If your primary care doctor is hesitant or unfamiliar with ATTR-CM, request a referral to a cardiologist, preferably one who specializes in heart failure or amyloidosis.
Sample language:
“Given my symptoms and background, I’d feel more comfortable if a cardiologist evaluated me for possible ATTR-CM or other cardiac conditions.”
4. Get a Second Opinion
It’s your right. If you feel dismissed, seek another provider—preferably a cardiologist familiar with Black patient health disparities. Many academic hospitals now have amyloidosis centers with specialists who understand the disease.
Find a center: Use the Amyloidosis Research Consortium’s Center Directory to find a specialist near you.
Fatigue, swelling, and shortness of breath are not just inevitable signs of aging, and they are not just “life being hard.” For Black Americans, recognizing the risk of diseases like ATTR-CM is critical. With awareness, advocacy, and culturally competent care, we can change the narrative around heart health in our communities.
Remember:
- Know the symptoms
- Be vocal and specific with doctors
- Push for the right tests
- Don’t settle for dismissal
If you have been diagnosed with heart failure, it’s important for you to manage and keep track of symptoms. Your health care team will tell you which heart failure symptoms you should track. You may also be asked to keep track of other factors, such as oxygen use and diuretic (“water pill”) use. Always report any sudden changes to your healthcare team.
Our health is our power. When we honor our bodies and insist on excellent care, we carry forward the legacy of resilience, strength, and self-advocacy that has defined Black communities for generations.
