Amyloidosis is a group of rare diseases in which misfolded proteins called amyloid build up in the body's tissues and organs, gradually impairing how they function. The two most common forms are AL (light chain) amyloidosis, caused by abnormal antibody-related proteins, and ATTR (transthyretin) amyloidosis, which increasingly affects the hearts of older adults. Living with a rare, often serious, and progressive disease — frequently one that affects the heart — takes a real emotional toll, and two studies together covering more than 1,300 patients set out to measure just how common anxiety and depression really are.
What Research Shows
In the largest of these studies, researchers surveyed 1,226 people with AL amyloidosis using the SF-36 health survey and found that 46.7% reported anxiety and 37.0% reported depression. People whose amyloidosis had affected their heart reported significantly more anxiety (odds ratio 1.29, 95% CI: 1.03–1.61) and more limitations in daily life due to emotional problems (odds ratio 1.32, 95% CI: 1.05–1.65) than those without cardiac involvement. In a separate study focused specifically on 109 people with ATTR cardiac amyloidosis, 33% met criteria for clinically significant anxiety and 42.2% for depression on the Hospital Anxiety and Depression Scale (HADS) — and almost half of patients (49%) showed a clinical level of anxiety, depression, or both. This second study also included a comparison group of 33 people without amyloidosis, matched for age, gender, and education: only 15.2% of that comparison group showed clinically significant anxiety and 21.2% showed depression, confirming that people with ATTR cardiac amyloidosis experience meaningfully higher rates of psychological distress than similar people without the disease.
Ways to Cope
- Know these feelings are common, not a personal failing. Across these studies, roughly a third to nearly half of people with amyloidosis showed clinically significant anxiety or depression — if you're struggling, you are far from alone.
- Take a heart connection seriously if you have cardiac amyloidosis. Research found people with cardiac involvement reported meaningfully more anxiety than those without — the racing heart and breathlessness of cardiac symptoms can become tangled up with anxious feelings, and that link is well documented.
- Ask your amyloidosis care team about a mental health referral. Because these are rare diseases, mental health support is sometimes overlooked in favor of managing the physical illness — it's worth raising the topic directly at your next appointment.
- Track your mood alongside your physical symptoms. Noticing patterns over time — and mentioning them at appointments — can help your care team catch and address distress earlier.
- Look for amyloidosis-specific patient communities. Because these conditions are rare, connecting with others who understand the specific realities of AL or ATTR amyloidosis can reduce the isolation that often comes with a less-common diagnosis.
Why Cardiac Involvement Seems to Matter
Both studies point toward the heart as a key factor in emotional wellbeing for people with amyloidosis. In the larger AL amyloidosis study, cardiac involvement was linked to significantly higher odds of both anxiety and emotional role limitation, even after accounting for other factors. The comparison-group study went a step further, showing that people with ATTR cardiac amyloidosis specifically reported anxiety and depression at more than double the rate of similar people without the disease (33% vs. 15.2% for anxiety; 42.2% vs. 21.2% for depression). Researchers also found that older patients, and especially women, with more advanced disease appeared to be at greater risk — suggesting that as the physical burden of cardiac amyloidosis increases, so does the emotional one. This underscores that psychological distress in amyloidosis isn't incidental; it tracks closely with the disease's most serious physical complications.
You're Not Alone
Because this research suggests that a large share of people with amyloidosis experience clinically significant anxiety, our page on Feeling Anxious or Stressed offers grounding tools that may help. Because depression was found at a similarly high rate, our guide to Feeling Low or Depressed can offer a starting point. And because amyloidosis is a serious, ongoing condition, our page on Living with Chronic Illness or Pain may offer additional, practical support.
Tips for Supporting Someone
- Ask about mood, not just physical symptoms. Research found that a large share of people with amyloidosis have clinically significant anxiety or depression — a simple check-in about how they're feeling emotionally can matter as much as asking about their heart or other symptoms.
- Recognize that cardiac symptoms and anxiety can be intertwined. If your loved one has cardiac amyloidosis, know that research links heart involvement to higher anxiety — their worry about their heart is grounded in a real, documented pattern, not an overreaction.
- Don't underestimate the isolation of a rare disease. Because amyloidosis is uncommon, people living with it may feel that few others understand what they're going through — helping them find amyloidosis-specific support can make a real difference.
- Encourage a conversation with their care team about mental health support. Because rare disease care often focuses heavily on physical treatment, gently raising the option of a mental health referral can open a door that might not otherwise be opened.
- Recognize this is common, not unusual. With figures drawn from well over a thousand patients, anxiety and depression in amyloidosis are well-documented and common — the person you're supporting is far from alone in this experience.