Living With Cardiac Amyloidosis

Finding out that you or someone you care about has cardiac amyloidosis can be worrying. While it’s good to do your own research, make sure you know what type of cardiac amyloidosis you have and try to stick with trusted sources of information. Your care team is in the best position to answer your questions.

Many people want to know how the disease will progress, as well as how it might affect their day-to-day life and how long they will live. It’s often very individual and depends, in part, on the type of amyloidosis someone has, and the extent to which amyloid proteins have built up in and around the heart.

Learn more: Different types of amyloidosis

In general, ATTR amyloidosis, which makes up most cases of cardiac amyloidosis, is less severe and more treatable than AL amyloidosis. It is often a disease of older adults.

The good news is that we understand cardiac amyloidosis much better today and have treatments for ATTR that weren’t available even a decade ago. Many more are the focus of clinical trials.

Because amyloidosis can affect many parts of the body, you may see several specialists. If you have musculoskeletal or orthopedic issues (for example, unexplained back pain, or pain, tingling or numbness in your arms or hands) or stomach issues (diarrhea, nausea, weight loss), be sure to tell your care team. They can refer you to and coordinate with other specialists if needed.

As with any heart condition, it’s important to make heart-healthy choices, work to lower stress and get quality sleep. Talking with other people who have the condition may help too.

If you have an inherited form of cardiac amyloidosis, ask your care team about who in your family should be screened to diagnose, monitor and start treatment as early as possible and help lessen the damage.