As a whole, we (Black people) have got to start having these tough conversations, especially when it comes to our health. I believe that a pretty good amount of us operate from the “out of sight, out of mind” perspective or the whole “that could never happen to me” mindset. Well, out of sight, out of mind doesn’t mean it’s not happening, and the whole idea of “it could never happen to me,” very well could.
Transthyretin amyloidosis (ATTR-CM) is a protein disorder. ATTR-CM occurs when your liver produces faulty transthyretin (TTR) proteins. Clumps of these abnormal proteins (fibrils) build up in your heart’s main pumping chamber. Your left ventricle; one of the two large chambers that are located toward the bottom of the heart, in which collect and expel blood towards the peripheral beds that are within the body and lungs, starts to become stiff and weak. This cardiomyopathy (disease of the heart muscle) then makes it harder for your heart to pump blood to your body.
There are two types of ATTR-CM, hereditary (familial), meaning there’s a variant in the transthyretin gene, which can run in families. Then there’s the wild type, which occurs for no known reason, and most commonly affects the heart and nervous system. It’s also associated with aging.
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Did you know ATTR-CM affects Black communities more than any other? It’s actually far more common than we think, and experts believe the condition is currently underdiagnosed. For example; older Black patients who may be misdiagnosed with high blood pressure-related heart disease, may actually have ATTR-CM. An estimated 1 in 25 Black people have a changed TTR (protein found in cells that circulate in your blood) gene. This is the most common variant in the United States. As a whole, Black people are more likely to develop hereditary (familial) ATTR-CM. Black men (assigned male at birth) are more likely to develop familial ATTR-CM.
RELATED: 5 Key Challenges Facing Black Folks with ATTR-CM
Symptoms of ATTR-CM:
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- Fatigue
- Bloated stomach
- Sudden drop in blood pressure upon standing
- Loss of consciousness due to slow heart rate and brief heartbeat pauses
- Dizziness
- Shortness of breath with physical activity
- Trouble breathing when lying down
- Heart palpitations(fluttering, fast-beating or pounding heart)
- Fluid retention in your legs, ankles and feet
- Abdominal swelling
- Difficulty thinking and/or confusion
- Pain or numbness in the lower back or legs
- Irregular/fast heart rate
- Coughing or wheezing
Risks and complications of ATTR-CM:
- This can lead to atrial fibrillation (an irregular and often rapid heart rate that commonly causes poor blood flow)
- This can lead to congestive heart failure
- Carpal tunnel syndrome (numbness and tingling in the hand and arm caused by a pinched nerve in the wrist)
- Spinal stenosis (this happens when the spaces inside the bones of the spine get too small)
- Eye floaters (spots in vision that normally look like black or gray specks and/or strings that drift across the eyes)
- Peripheral neuropathy (this happens when the nerves that are located outside of the brain and spinal cord (peripheral nerves) are damaged)
RELATED: ATTR-CM: Understanding This Rare But Serious Condition
Diagnosis for ATTR-CM:
- Blood tests that specifically look for changes in the TTR gene
- Biopsy of the heart
- Bone scans to check for amyloid deposits
- Cardiac imaging(MRI, PET scans)
- An electrocardiogram (ECG) records the electrical activity/signals in the heart
There is no cure for ATTR-CM, and unfortunately, there is no way to rid the body of any existing amyloid deposits. On the other hand, you can receive treatments to ease symptoms.
Treatment options may include:
- Medications that halt/prevent disease progression by slowing or stopping the buildup of protein deposit
- Liver transplant (though, this does not cure/rid the disease)
Tips, tools and living habits you should explore:
- Reduce the amount/intake of high-sodium foods
- Follow a heart-healthy lifestyle
- Monitoring water/liquid intake
- Use compression socks for swelling/inflammation
- Reduce stress
- Stay in communication with your trusted healthcare provider
ATTR-CM is a serious, underdiagnosed and underrecognized condition that almost exclusively affects the Black community. Speak with your healthcare provider about any concerns, signs or symptoms you may have. If you’re in search of one, explore here.
