How to seek support when living with ATTR cardiomyopathy

Transthyretin amyloid cardiomyopathy (ATTR-CM) is a rare condition where misfolded transthyretin (TTR) proteins accumulate in the heart muscle. This accumulation of proteins causes the heart muscle to become thickened and stiff, which makes it more difficult for the heart to fill with blood and empty itself of blood.

As ATTR-CM progresses, the heart becomes less effective at circulating blood throughout the body. A person with ATTR-CM may experience symptoms like fatigue, shortness of breath, and edema (fluid buildup and swelling, often in the feet, ankles, and legs). Complications can include heart failure, irregular heart rhythm (arrhythmias), and cardiac events like heart attack. This disease can also affect the nerves and kidneys.

Cardiovascular disease and mental health

Research has found that anxiety and depression symptoms are more prevalent among people with heart conditions, including ATTR-CM. Changes in heart health may contribute to changes in moods, thinking, and behavior. Mental health may be affected by uncertainty about the future, physical discomfort, limitations on daily activities, and feeling like a burden to others.

The challenges of living with a rare condition

While it’s not known how many people have ATTR-CM, the condition is considered rare (or at least uncommon).

Rare conditions often come with additional challenges. Finding accurate, understandable information is one example. There is generally less information available about rare conditions, and the information that is available can sometimes be technical or overwhelming.

Healthcare can present other challenges. Due to the rarity of the condition, most healthcare providers will have limited experience diagnosing and treating ATTR-CM. Also, a person will often find fewer options when seeking healthcare providers who specialize in rare conditions.

There may also be social challenges. Explaining a complex and uncommon condition to family members, friends, and coworkers can be difficult, especially when a person is still learning about their diagnosis.

Strategies for seeking support when living with ATTR-CM

ATTR-CM is a different experience for everyone. Finding support starts with recognizing the specific ways that this condition is impacting you.

Identify how your diagnosis is impacting your life

Write down notes on how you feel and questions you have for your healthcare team and bring these to your appointment. Some ideas to get started:

• What has become more difficult since your diagnosis?
• Do you feel anxious about your health?
• Do you have concerns about how the diagnosis will impact your finances?
• What questions do you have about your diagnosis?

Talk to your healthcare providers

Your healthcare providers should understand your concerns and what you need from treatment, and they will rely on you for this information. Be honest about your emotions and experiences. In addition to questions you have, you may want to:

• Ask about resources to help you learn more about ATTR-CM
• Ask for suggestions for managing specific symptoms (for example, fatigue or GI distress)
• Ask about local services, support groups, and other resources that may be able to support you and your caregivers in different ways

Consider working with a mental health professional

Therapists and counselors can be valuable members of a healthcare team for anyone living with a chronic health condition. Some ways counseling and therapy can help may include:

• Developing coping strategies and strategies for managing stress
• Learning ways to talk about your diagnosis, recognize your needs, and communicate your needs
• Identifying and addressing ways that the condition is affecting your day-to-day life, such as changes to sleep habits

Connect with ATTR-CM organizations

There are several organizations that provide support and advocate for people with ATTR-CM.

• Amyloidosis Research Consortium
• Amyloidosis Foundation
• Amyloidosis Support Groups

These organizations provide patient education materials, maintain a list of specialists that treat ATTR-CM, publish news on new research and treatments, and connect people with support groups.