Many people have never heard of cardiac amyloidosis, sometimes called “stiff heart syndrome.” As a cardiologist who specializes in the disease, I’m on a mission to change that.
The reason? Cardiac amyloidosis is a serious heart condition. But it can be managed when it’s caught quickly. Being informed about the symptoms and risk factors can help patients know what to watch for — and when to seek expert care.
Here are five things I want everyone to know:
1. It happens when abnormal proteins build up in the heart.
Amyloid proteins are abnormal proteins that deposit in organs. When they build up in the heart, we call it cardiac amyloidosis. The deposits make the heart thick and stiff. That can lead to arrhythmias and heart failure.
Many types of proteins can cause amyloidosis. But there are two types that are most likely to harm the heart. These are light chain amyloidosis (AL) and transthyretin amyloidosis (ATTR).
2. It’s often missed.
In the early stages, symptoms may be subtle — or absent. They can also match the symptoms of more common conditions. That’s part of what makes cardiac amyloidosis a challenge to diagnose. Even when patients realize there’s a problem, providers may not recognize what it is.
Signs and symptoms of cardiac amyloidosis may include:
- Shortness of breath when you’re active or lying down
- Weakness
- Extreme tiredness
- Heart palpitations
- Swelling in your abdomen, legs or feet
Some people with cardiac amyloidosis also have:
- Poor appetite
- Diarrhea or constipation
- Purple spots around the eyelids
- Easy bruising
- A large tongue
3. Some people are more at risk than others.
Older adults and people of Caribbean and African descent may have a higher risk of cardiac amyloidosis. Certain health histories may also signal a higher risk. That includes:
- Orthopedic problems. This includes carpal tunnel syndrome, lumbar spinal stenosis, or having had a joint replaced.
- Heart failure with preserved ejection fraction (the pumping ability of the heart is still normal).
- Aortic stenosis.
- Multiple myeloma.
Genes may also play a role in cardiac amyloidosis. If a family member had it, you’re at higher risk for having it as well.
4. Specialized care matters.
Cardiac amyloidosis is not common. That means some doctors may lack experience in diagnosing or treating the condition. At the Temple Heart & Vascular Institute, we have the skills and experience to recognize conditions like cardiac amyloidosis.
We offer a wide range of tests. Blood tests, imaging, and even heart biopsies offer answers and help us monitor a patient’s condition. And knowing the real cause of a patient’s heart problem means we can offer the best treatment.
5. Treatment can be lifesaving.
Medications can keep the amyloid proteins from continuing to clump or build up. I might also prescribe medications to help manage symptoms or treat complications, such as heart failure.
When medications aren’t enough, our Temple Advanced Heart Failure Program offers advanced treatments. And if a heart transplant is needed? Our expanded heart transplant list helps more patients get these lifesaving surgeries.
Protect your heart health
Are you concerned about cardiac amyloidosis or other heart health issues? Meeting with experts who are experienced in rare conditions can be life changing. Call 800-TEMPLE-MED (800-836-7536) or request an appointment online.
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