Transthyretin amyloid cardiomyopathy (ATTR-CM) is a rare disorder that causes a buildup of protein deposits in the heart muscle. This causes the heart muscle to become thickened and stiff, which can interfere with the heart’s ability to pump blood.
Symptoms of ATTR-CM
Symptoms and the severity of symptoms can vary from person to person. For some, ATTR-CM causes no symptoms or mild symptoms. Others experience heart failure-like symptoms that significantly limit day-to-day capabilities, such as:
- Fatigue
- Shortness of breath
- Chest congestion
- Reduced capacity for activity
- Bloating
- Irregular heart rhythms
- Problems with thinking and memory
- Swelling/fluid buildup in the feet, ankles, and legs
In some cases, other parts of the body are affected such as the nervous system, kidneys, and gastrointestinal tract.
The role of caregivers
People with ATTR-CM often rely on help from family caregivers, such as partners, adult children, or other loved ones. Caregiver responsibilities can include helping with everyday tasks, attending healthcare appointments, day-to-day management of the disease, and monitoring for changes in symptoms.
Treatment options for ATTR-CM have improved in recent years, with newer medications that slow or stop the progression of the disease. Therapies and lifestyle changes to manage heart failure and other symptoms are also typically a part of treatment.
Resources for caregivers and people with ATTR-CM
A diagnosis of ATTR-CM and taking on the role of a caregiver can feel overwhelming. But there are resources available to help you and your loved one. Your best source of information will always be your healthcare providers—be honest about the challenges of ATTR-CM and ask what can be done to help you and help your loved one.
Additionally, organizations like the ones listed below may be able to assist you in learning about the disease and accessing support:
Amyloidosis Support Groups (ASG)
ASG offers a searchable database of support groups and treatment centers throughout the United States. You’ll also find webinars covering various topics and a chart of current FDA-approved treatments and treatments under investigation.
Amyloidosis Research Consortium (ARC)
ARC is a nonprofit focused on advancing research and improving access to treatment for people living with ATTR-CM and other forms of amyloidosis. Along with pages of patient education materials, you’ll find resources to help you locate support groups (including online groups), treatment centers, and clinical trials.
Amyloidosis Foundation
Visit the website of this nonprofit for up-to-date medical information about amyloidosis and treatment. The resources section of the site provides dozens of links to organizations that are potentially helpful to people with ATTR-CM and caregivers, including a state-by-state listing of treatment centers and links to resources for financial assistance (found under “Additional Resources”).
American Heart Association Support Network
The American Heart Association is one of the most comprehensive resources for information about diseases that affect the heart. The Support Network community provides the opportunity to connect and share with others on relevant topics including caregiving, amyloidosis, cardiomyopathy, and heart failure.
National Institute on Aging
A great resource for people who are new to caregiving, with pages to help identify what type of care a loved one needs, coordinating caregiving responsibilities among several people, answers to frequently asked questions, and caregiver checklists.
Sources: Anubhav Jain and Farah Zahra. Transthyre... + 5
- Anubhav Jain and Farah Zahra. Transthyretin Amyloid Cardiomyopathy (ATTR-CM). StatPearls. April 27, 2023.
- American Heart Association. Transthyretin Amyloid Cardiomyopathy (ATTR-CM). Accessed on October 14, 2025.
- Cleveland Clinic. Transthyretin Amyloidosis (ATTR-CM). Accessed on October 14, 2025.
- Lucia Ponti, Kristen Hsu, et al. Burden of untreated transthyretin amyloid cardiomyopathy on patients and their caregivers by disease severity: results from a multicenter, non-interventional, real-world study. Frontiers in Cardiovascular Medicine. August 29, 2023.
- David Rintell, Dena Heath, et al. Patient and family experience with transthyretin amyloid cardiomyopathy (ATTR-CM) and polyneuropathy (ATTR-PN) amyloidosis: results of two focus groups. Orphanet Journal of Rare Diseases. February 8, 2021.
- Aldostefano Porcari, Gianfranco Sinagra, et al. Breakthrough advances enhancing care in ATTR amyloid cardiomyopathy. European Journal of Internal Medicine, 2024. Vol. 123.
