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Updated on October 16, 2025
Transthyretin amyloid cardiomyopathy (ATTR-CM) is a genetic condition that affects the heart muscle and the heart’s ability to fill and empty itself of blood. It can have genetic or age-related causes.
ATTR-CM occurs when misfolded proteins accumulate in the heart muscle, forming buildups called amyloids. This accumulation of proteins causes the heart muscle to become thickened and stiff, which interferes with the heart's ability to pump blood. People with ATTR-CM can experience shortness of breath, fatigue, swelling in the legs and ankles, and irregular heartbeat. The disease can also affect the nerves, kidneys, and GI tract.
There is no cure for ATTR-CM, and treatment focuses on managing symptoms and slowing disease progression. Treatment options have improved significantly in the past decade, with medications that can help slow or stop amyloid deposits from forming, which helps slow the progression of the disease. Other treatments are under development.
Caregiving for someone with ATTR-CM
ATTR-CM often affects a person’s abilities and daily functioning, reducing how much a person is able to do on their own. Support is often essential to managing ATTR-CM. People with the condition often require help from caregivers, such as spouses, adult children, or other loved ones.
Caregiving for a person with ATTR-CM can be a rewarding and fulfilling experience. It can also be emotional, stressful, and challenging.
Here are a few things to keep in mind, and a few strategies that may help:
Pay attention to what you need
While caregiving will involve putting a loved one’s needs above your own at times, you also need to prioritize your own physical and mental health. Pay attention to what you need. This means eating well, staying active, getting enough sleep, managing stress levels, maintaining friendships, and recognizing when you need a break.
It’s important to keep up with your own healthcare—it can be tempting to skip your own appointments when a loved one’s healthcare requires a lot of your time.
Ask for and accept help
Even if you are the primary caregiver, you do not need to do everything on your own. Talk to the people in your life who can help you. Help does not always need to be directly related to caregiving responsibilities. It can also be practical help—help with errands, grocery shopping, household chores or projects, and any other tasks that can free up some of your time and energy.
In addition to asking for help, also practice saying “yes” when someone offers help.
Recognize the signs of caregiver burnout
Caregiver burnout is described as “a state of mental, emotional, and physical exhaustion” that occurs when the demands of caregiving (and all of life’s other demands and obligations) become too much. This is a possibility that caregivers need to be aware of and take steps to avoid.
It also helps to recognize the common signs of significant stress and burnout:
- Feeling emotionally, mentally, and/or physically exhausted
- Feeling irritable or impatient
- Difficulty concentrating and staying focused, forgetfulness
- Lacking interest in activities that are typically enjoyable
- Difficulty falling asleep, staying asleep, or getting enough restful sleep
- Negative feelings towards the person you care for
- Difficulty keeping up with basic needs, like eating meals and personal hygiene
- Withdrawing from friends and family
- Using alcohol, other substances, or other unhealthy behaviors as coping mechanisms
- Headaches, stomachaches, other unexplained aches and pains
- Anxiety, depression, feelings of hopelessness, low self-esteem
If you find yourself experiencing symptoms of caregiver burnout, talk to a healthcare provider. You can also talk to your loved one's healthcare team. Social workers and case managers can provide support, counseling, and advice on strategies to avoid and address burnout.
Work with a mental health professional
Adjusting to life with ATTR-CM can be challenging for many different reasons. Counseling and therapy can be a valuable source of support for caregivers, family members, and people living with ATTR-CM. If you’re interested in exploring these options, your healthcare team may be able to provide recommendations or referrals.
Connect with other people with similar experiences
Consider participating in a support group for caregivers who are facing situations similar to your own. It may be difficult to find a support group specific to ATTR-CM in your area (the condition is considered rare), but you can seek out local support groups for caregivers, or online communities related to ATTR-CM.
