Hereditary transthyretin amyloid cardiomyopathy (hATTR-CM) is a serious heart condition. It can get worse over time and may lead to heart failure. But newer treatments, many available only in the last several years, have changed what’s possible for your future.
“What we have available post-2019 is a different world,” says Ike Okwuosa, MD, a cardiologist at the Bluhm Cardiovascular Institute of Northwestern Medicine in Chicago, Illinois. “The goal is to get you on treatment, slow the progression of the disease, and get you to a long, long life.”
Even with that hope, living with hATTR-CM can still be a lot to carry. And if you’re a person of color, especially a Black American, there may be extra layers of stress to sort through.
A gene change linked to hATTR-CM is more common in people of west African descent. And your lived experience shapes how you move through the health care system.
Historical and ongoing racism, medical mistrust, delayed diagnosis, and limited access to specialists, testing, or treatment can all make timely, high-quality care harder to get.
That added strain can affect your heart and your mental health. You deserve care for both.
Why Mental Health Care Matters for hATTR-CM
When you first read about hATTR-CM, the facts can sound scary. Older survival rates may make your future feel bleak. But Okwuosa stresses that many of those numbers come from the years before targeted treatments, such as:
- Acoramidis (Attruby)
- Patisiran (Onpattro)
- Tafamidis (Vyndamax)
- Vutrisiran (Amvuttra)
Still, living with a serious heart condition can take an emotional toll.
“What we understand with cardiovascular disease more broadly, and particularly with heart failure, is rates of anxiety, depression, PTSD, and overall psychological distress are really high,” says Alyssa Vela, PhD, a clinical health psychologist who practices cardiac behavioral medicine at Northwestern Medicine.
That matters because mental health can shape how well you’re able to care for your body. When you feel anxious, depressed, numb, or worn down, you may not:
- Sleep well
- Exercise regularly
- Take your medicine as prescribed
- Eat regular, nutritious meals
- Go to medical appointments
- Ask for help when you need it
Over time, those missed steps can affect your heart health, energy, symptoms, and quality of life. And if your physical health worsens, your mood may dip even more.
“The brain and heart are very much connected,” Vela says. “Mental health symptoms can make cardiac symptoms worse and make it harder to do the things that keep you well.”
Name What You’re Feeling
Meghan Beier, PhD, is a health psychologist at the Rowan Center for Behavioral Medicine in Baltimore. She works with people living with chronic illness and life-changing medical conditions.
Beier says uncertainty is one of the biggest emotional challenges of living with a condition like hATTR-CM. You may get new or changing symptoms over time, and that can make it hard to know what comes next.
The diagnosis can also change how you see your future.
“You picture your life in one way, this diagnosis comes along, and the trajectory is inevitably changed,” Beier says. “Even if you still live a very full and purposeful life, there’s still grief and loss for what could have been.”
One way to start processing your emotions is to name what you’re feeling. You might say:
- I’m scared because I don't know what to expect.
- I’m angry because I had to fight to get diagnosed.
- I feel guilty because I might’ve passed this to my kids or grandkids.
- I feel worn down because I don’t always feel heard by doctors.
Beier says cognitive behavioral therapy (CBT) can help you notice unhelpful thoughts and replace them with ones that feel more fair and useful.
That shift can be especially helpful with a condition that runs in families. You can’t change the genes you were born with. But if you know you have hATTR-CM, you may be able to help your family learn about their own risk.
Early Support Can Make a Difference
Okwuosa says he often opens the door to mental health care early on by asking people where they are with anxiety. Many come in at “a 10 out of 10,” he says, especially when hATTR-CM is new to them. As he explains the condition and treatment choices, that anxiety often comes down.
He also asks how people manage their mood. You might already have tools that help, such as:
- Talking with family
- Praying or leaning on faith
- Dancing
- Listening to music
- Spending time with people you trust
If your cardiologist doesn’t bring it up first, you can ask if there’s a mental health provider on your care team. You don’t need to wait until you’re in a crisis. A therapist, counselor, social worker, or psychologist can help you manage hard feelings before they overwhelm you.
Find a Therapist Who Gets the Full Picture
In an ideal world, your heart team would refer you to a mental health professional who works in cardiac behavioral medicine. But those providers are “very few and far between,” Vela says.
The next best choice is a general health psychologist. This might be someone with experience treating people with chronic illness, medical trauma, grief, or disability. If you can’t find this kind of specialist, it’s still helpful to meet with any mental health professional you can access or afford.
Beier says people with hATTR-CM don’t necessarily need a completely different kind of therapy. Many of the same tools that help people without chronic illness can still work.
But a health psychologist or therapist who understands medical conditions can help you adapt those tools to your body and energy level.
Take behavioral activation, a common treatment for depression. It means slowly adding small, meaningful activities back into your day. But if you have fatigue, shortness of breath, or trouble exercising, pushing yourself too hard can make your symptoms worse.
A therapist who understands heart conditions can help you:
- Pace your activity and exercise
- Find new and safe ways to do things that feel meaningful
- Sort out hATTR-CM symptoms from depression
- Build skills for managing stress related to your health
Your therapist also needs to feel like a good cultural fit. That might mean sharing your racial or ethnic background. Or it may simply mean they’re able to respect and understand your lived experience.
Beier suggests asking a potential therapist questions like:
- Have you worked with people who have chronic illnesses or heart conditions?
- What is your experience working with historically marginalized groups?
- How do you approach therapy with someone whose cultural background differs from yours?
You can also ask practical questions, such as:
- Do you offer telehealth?
- Do you take my insurance or offer a sliding scale payment?
- Do you offer a free consultation or brief intro call?
Beier suggests giving a new therapist about three sessions. If you still don’t feel a connection, it’s OK to move on. You might say something like, “I don’t think this is the best fit. Do you have names of other therapists you’d suggest?”
A good therapist should be able to handle that conversation and help you find someone who’s a better match.
Talk About Mistrust, Money, and Access
When you live with hATTR-CM, it’s not just the physical symptoms that weigh on you. Worry about whether you can trust the health care system, or even afford care, can add a heavy mental and emotional burden.
Medical mistrust doesn’t come out of nowhere. Okwuosa points to a long, well-documented history of harm in medicine, particularly toward Black communities. Some people may not want to see a doctor because they worry they won’t be heard or they don’t want to feel like “a guinea pig” for treatment.
Doctors have a role to play in rebuilding that trust, he says. “We have to listen,” he says. “And we have to also do the fundamental portion of teaching.”
That means your doctor should explain why you’re taking a medicine, how it works, and what side effects to watch for. When you understand your treatment plan, it can ease some anxiety and help you feel more in control.
If something isn’t clear, you can ask:
- Can you explain why I need this medicine?
- What side effects should I watch for?
- What should I do if I miss a dose?
- How will we know if it’s working?
- Are there other options?
- Can you write this down for me?
You and your doctor are a team. That means you should be able to talk openly about what you need, including help with costs.
You might feel embarrassed to say you can’t pay for medicine, rides, or follow-up visits. Or you may worry your doctor will judge you or avoid giving you expensive treatment. But it’s better to speak up.
“If you can’t afford a certain medication, or if the copay is too high, then let us know,” Okwuosa says. “We should be able to exhaust all of our resources to see if we can make it possible.”
Where to Find Support
Support can come from many places: family, friends, church, peer groups, social workers, therapists, or other people living with hATTR-CM or cardiac amyloidosis.
Beier says peer support can be especially powerful when it leaves you feeling informed and less alone.
“In the chronic illness world, one of the most valuable things is finding a network of people living with the same condition,” she says.
Amyloidosis-specific groups may help you learn more about the condition and connect with other people who understand what you’re going through.
Examples include:
- Amyloidosis Alliance
- Amyloidosis Foundation
- Amyloidosis Research Consortium
- Amyloidosis Support Groups
- International Society of Amyloidosis
You can also use online directories to find a mental health provider. Many have filters to narrow your search.
Helpful places to start include:
- Therapy for Black Girls, which includes a directory of Black therapists.
- Psychology Today, where you can search by insurer, location, speciality, and identity.
- PSYPACT, which can help you find psychologists who can provide telehealth across state lines.
- Your insurance company’s provider directory.
- A social worker at your hospital or amyloidosis center.
Ask your care team about free or lower-cost mental health tools. Beier often refers clients to free DBT worksheets online. DBT is a type of talk therapy that teaches you skills for managing strong emotions, improving relationships, and tolerating stress.
She also points some people to the “Treatments That Work” workbook series. These books offer research-backed tools for issues such as anxiety, sleep, chronic pain, and mood. They may help if therapy is hard to access, but they don’t replace care from a health professional.
Mental health care won’t change the fact that you have hATTR-CM. But therapy, peer support, and the right care team can help you feel less alone and more supported as you manage what comes next.
Show Sources
Photo Credit: Moment/Getty Images
SOURCES:
Ike Okwuosa, MD, cardiologist, Bluhm Cardiovascular Institute of Northwestern Medicine; associate professor, Northwestern University Feinberg School of Medicine.
Meghan Beier, PhD, psychologist, Rowan Center for Behavioral Medicine; founder & CEO, Find Empathy; senior programs consultant, Can Do Multiple Sclerosis.
Alyssa Vela, PhD, vice chair for health equity, department of surgery; assistant professor, surgery (cardiac surgery), psychiatry and behavioral sciences, Northwestern University Feinberg School of Medicine.
BMJ Open: “Anxiety and depression in cardiac amyloidosis: a systematic review.”
Frontiers in Psychology: “Prevalence of anxiety and depression symptoms in a sample of outpatients with ATTR cardiac amyloidosis.”
Harvard Review Psychiatry: "Depression and Anxiety in Heart Failure: a Review.”
Current Cardiovascular Risk Reports: “Racial and Ethnic Disparities in Transthyretin Cardiac Amyloidosis.”
Cardiology and Therapy: “Current and Future Treatment Landscape of Transthyretin Amyloid Cardiomyopathy.”
