Understanding Cardiac Amyloidosis

We sat down with Dr. Nowell Fine, MD, a cardiologist and researcher with an expertise in cardiac amyloidosis to learn more about cardiac amyloidosis. Dr. Fine co-leads the Amyloidosis Program of Calgary. To learn more about this program, contact Jan Veenhuyzen at jveenhuy@ucalgary.ca.

Q: What, in lay terms, is cardiac amyloidosis?

A: Amyloidosis is a chronic disease where a protein made by our bodies begins to fold in an abnormal way and results in build-up of deposits causing damage in organs like the heart and kidneys. When amyloidosis affects the heart, it is called ‘cardiac amyloidosis’.

Q: How does it impact patients?

A: Individuals with cardiac amyloidosis often develop heart failure. This leads to shortness of breath with exertion and fluid retention, particularly in the legs. It can progress to fluid build up in the lungs, which causes an inability to breath in patients with severe disease. Amyloidosis can also cause low blood pressure, severe fatigue, and affect other areas of the body such as the nerves and digestive system.

Q: What are the two different types of cardiac amyloidosis?

A: The two main types of cardiac amyloidosis are light-chain (AL) and transthyretin (ATTR) amyloidosis. AL amyloidosis is a form of cancer that originates in the bone marrow, while ATTR is an infiltrative disease that is either inherited (runs in families) or occurs as a result of aging.

Q: Is it preventable?

A: While cardiac amyloidosis is treatable, unfortunately it is not preventable.

Q: How many people does this impact?

A: Cardiac amyloidosis is a rare disease, and although we do not know how common it really is, we estimate it impacts between 200-300 people per million.

Q: How is cardiac amyloidosis treated in Calgary?

A: The treatment for cardiac amyloidosis depends on the type that a person has. AL amyloidosis is treated with chemotherapy. ATTR amyloidosis is treated with medications that prevent the disease from getting worse. Patients are also treated with more common medications such as diuretics to reduce symptoms such as shortness of breath and fluid retention.

Q: What should people know about cardiac amyloidosis?

A: An important thing to know about cardiac amyloidosis is that the treatments that are currently available are very effective; however, they work best when the patient is diagnosed early, and so early diagnosis is very important.

Q: Why is it important to raise awareness about this condition?

A: Because cardiac amyloidosis is rare, many health care providers don’t know much about it. As a result, many patients can suffer with symptoms for a long time before they are properly diagnosed. This can go on for years. And because effective treatments are available, raising awareness is critical to ensure that patients are properly diagnosed and started on treatment in a timely manner.

Q: How can people get help in Calgary for amyloidosis?

In Calgary there is a dedicated team of specialists from different areas of medicine who provide care for amyloidosis patients, called the Amyloidosis Program of Calgary. Any patient who may have amyloidosis can be referred to this program. If a person is concerned about amyloidosis, they should talk to their doctor who can refer them for further assessment and information.

Dr. Nowell Fine, MD, is an associate professor in the departments of Cardiac Sciences, Medicine and Community Health Sciences at the Cumming School of Medicine. He is the director of Echocardiography for the Dept. of Cardiac Sciences, a cardiologist in Calgary’s Cardiac Amyloidosis Clinic and the co-director of the Amyloidosis Program of Calgary. He is the Libin Cardiovascular Institute’s clinical director.