ATTR amyloidosis life expectancy: FAQs

Transthyretin amyloidosis (also called ATTR amyloidosis) is a progressive condition in which amyloid proteins build up in certain organs and other structures in the body.

People can inherit the condition or acquire it during their lifetime, and it can affect the heart, spleen, liver, kidneys, blood vessels, and nerves. Although there is no cure, treatment can help slow the progression of the disease.

Life expectancy can depend on various factors, including the type of ATTR amyloidosis a person has and whether they have any other health conditions.

On average, ATTR amyloidosis life expectancy ranges from around 3 to 15 years from the time symptoms begin, but many factors affect how long a person may live.

wATTR is the more common form, and people with this type often receive the diagnosis at an older age. People are usually above 60 years old at the time of diagnosis, and the average age at diagnosis is about 75 years.

People later in life may have other health conditions that also affect their life expectancy. However, wATTR tends to progress more slowly than hATTR.

Life expectancy in hATTR amyloidosis is more varied and depends on which specific genetic mutation (change) a person has.

The mutation can affect disease onset, which can occur between 30 and 80 years of age. The specific mutation a person has can also determine how the disease affects the body — including the heart, the nerves, or both — and how it progresses.

Significantly more people have received ATTR amyloidosis diagnoses in recent years, partially as a result of greater awareness of the condition among doctors and a greater number of referrals after cardiac MRI scans and bone scintigraphy (bone scans).

People who receive a diagnosis sooner usually have symptoms for a shorter time, which means the disease has less time to progress.

These factors have improved life expectancy from the time of diagnosis.

Many factors determine how long someone may live with ATTR amyloidosis, but starting treatment early may lead to the best outcomes. Medications for ATTR typically attempt to stabilize the transthyretin (TTR) protein or prevent its production.

In 2019, the Food and Drug Administration (FDA) approved tafamidis (Vyndaqel, Vyndamax) for the treatment of ATTR cardiomyopathy, a type of heart disease that can develop as a result of ATTR amyloidosis.

One 2019 research review examined the 10-year survival rates of people with hATTR polyneuropathy (a form of hATTR that affects multiple organs) and a gene variant called V30M. Results showed that 93% of people treated with tafamidis were still alive 10 years later, as compared with 85% of people who had undergone a liver transplant.

This was not a straightforward treatment-comparison study, but the results suggest that tafamidis may extend survival longer than a liver transplant, especially when a person starts treatment early.

A heart-healthy diet can help lower a person’s blood pressure and reduce levels of low-density lipoprotein (LDL) cholesterol, often called “bad” cholesterol. These changes can support heart health and help a person manage ATTR amyloidosis.

Getting enough sleep is important for overall health and can help people manage ATTR amyloidosis. Inadequate sleep can increase a person’s risk of high blood pressure, a higher body mass index (BMI), and type 2 diabetes, and these conditions may worsen ATTR amyloidosis.

Smoking and drinking large amounts of alcohol can increase the risk of heart disease. Limiting or stopping these habits can help protect the heart.

Physical activity can reduce a person’s risk of developing other heart conditions, improve mental health, and make daily tasks more manageable.

However, ATTR amyloidosis can cause symptoms such as shortness of breath and can affect heart rate and blood pressure, which may make typical forms of exercise more difficult. Household chores, cooking, and gardening are all gentle forms of exercise that a person may not have considered before.

ATTR amyloidosis typically requires disease-modifying treatment alongside symptom management, and there have been great advances in the number of therapies available.

ATTR amyloidosis is a progressive condition. While there is no cure, early diagnosis and treatment may significantly slow and possibly almost halt its progression.

However, in 2023, the New England Journal of Medicine reported that three males with diagnosed ATTR amyloidosis had been spontaneously “cured,” showing no signs of disease.

Based on these results, experts hope that a natural cure is available, though they have yet to pinpoint it.

Transthyretin amyloidosis, or ATTR amyloidosis, is a progressive condition involving a buildup of amyloid proteins in a person’s organs. People can inherit this condition or acquire it during their lifetime.

Life expectancy is improving now that healthcare professionals have a greater awareness of the condition, and more people are receiving diagnoses and treatment.

A person’s life expectancy with ATTR amyloidosis will depend on factors such as the type of ATTR amyloidosis they have and whether they have any other health conditions.

While there is no cure for ATTR amyloidosis, identifying it early and promptly starting treatment with the most up-to-date medications can help significantly slow the progression.