Living With ATTR Amyloidosis

A diagnosis of ATTR amyloidosis can feel overwhelming. Receiving this diagnosis affects many parts of life. It is more than just medical appointments and treatments. It can affect your feelings, your relationships, your daily routines, and your finances.

Understanding these challenges is the first step. This article explores the common quality-of-life issues for people living with ATTR amyloidosis. It covers emotional health, sexual health, lifestyle, and financial impacts.

Your emotional and mental health

Living with a chronic disease is a heavy burden. It is normal to feel stressed, sad, or anxious. Research shows that these feelings are very common. A 2023 study looked at people with ATTR cardiac amyloidosis and found that almost half (49 percent) reported clinical levels of anxiety, depression, or both.³

People with hereditary ATTR (hATTR) – the type that runs in families – may face extra stress. They may worry about the disease being passed down to their children. These feelings can affect your quality of life.⁴

It is important to talk about these feelings. Do not ignore your mental health. Psychological support can help reduce the burden of the disease and improve your well-being. Your doctor can connect you with a counselor or support group. Stress management techniques may also help. These can include yoga, meditation, journaling, or spending time with loved ones.³

Changes in sexual health

Sexual health is another important part of life that ATTR amyloidosis can affect. This topic is often difficult to discuss, but it is a very common symptom. Studies show that sexual dysfunction is highly prevalent in people with ATTR. It may affect more than 40 percent of patients.⁵

This happens because amyloid deposits can damage the nerves that control sexual function. This is called autonomic neuropathy. The deposits can also affect blood flow.⁵

For men, this often causes erectile dysfunction. For women, this can mean sexual arousal disorder, a lack of vaginal lubrication, or pain during sex.⁵

Diet and exercise

If you have ATTR amyloidosis, you will likely have to make changes to your diet and exercise habits. Your doctor will guide you on the best plan for your specific condition.^6,7

Diet

There is no special diet that cures ATTR amyloidosis. However, many doctors recommend a heart-healthy diet. This is very important if the disease affects your heart (cardiac amyloidosis).⁶

Your doctor will likely suggest limiting your salt (sodium) intake. This helps control fluid buildup, which causes swelling (edema). Your doctor may also ask you to watch how much fluid you drink. Weighing yourself every day is a good way to catch fluid retention early.⁶

A heart-healthy diet also means:⁶

• Limiting saturated fats, trans fats, and sugar
• Eating plenty of fruits and vegetables
• Choosing whole grains
• Eating lean proteins, like chicken and fish

Exercise and physical therapy

Staying active with ATTR amyloidosis is important, but it can be hard. The disease itself creates challenges:^7,8

• Heart symptoms – A stiff heart muscle from amyloid deposits cannot pump blood well. This can cause shortness of breath and fatigue, making it difficult to move your body.
• Nerve symptoms – Damage to nerves can cause dizziness when you stand or move. It can also cause pain, numbness, and weakness in your feet and legs. This leads to balance problems and a higher risk of falling.

Talk to your doctor before starting any exercise. These risks are why your doctor will likely recommend physical therapy.^7,8

A physical therapist is a key partner for your health. They will create a personal and safe exercise program just for you. A therapist can teach you exercises to:^7,8

• Improve your balance
• Reduce your risk of falls
• Build strength safely
• Use a cane or walker correctly, if needed

Some doctors may also suggest a cardiac rehabilitation program. This lets you exercise in a safe, monitored setting. The goal is to listen to your body and stay as active as you safely can.^7,8

The financial impact

Living with ATTR amyloidosis can also be a financial burden. The cost of care is very high. This can cause "financial toxicity." This term describes the stress and hardship caused by medical costs.⁹

The financial distress for ATTR patients is similar to that of cancer patients. A 2022 survey from the Amyloidosis Research Consortium reported that:⁹

• 55 percent of patients reported financial toxicity.
• The average monthly cost just to manage the disease was over $700.
• About 1 in 5 patients (20 percent) had to delay starting their treatment because of cost or insurance problems.
• Many patients must use their savings, borrow money, or make other trade-offs to pay for care.

This financial stress is high even for patients with good incomes and health insurance. If you are worried about costs, a hospital social worker or a patient advocate can help. They may know about co-pay assistance programs or other resources.⁹

Talk to your healthcare team

ATTR amyloidosis is a complex, rare disease. It affects your physical health, your emotional well-being, your relationships, and your finances. New treatments are available that can slow the disease and improve quality of life.

You are the most important member of your care team. Be an active partner in your health. Talk to your doctor about all of your symptoms. This includes feelings of anxiety and depression, changes in sexual health, or worries about money. You are not alone, and help is available.