People diagnosed with hereditary transthyretin amyloidosis (hATTR amyloidosis) may wonder what the future holds for them and their loved ones. The condition can affect life expectancy, but new and emerging treatments are helping people live longer. “All of us don’t know our life expectancy with this disease. The only thing we can do is live our lives to the fullest,” one MyAmyloidosisTeam member shared.

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Hereditary transthyretin amyloidosis is a rare disease that causes the body to make abnormal transthyretin (TTR) proteins. These misfolded proteins clump together and form amyloid fibrils. Over time, this buildup can damage the nervous system, heart, eyes, and gastrointestinal tract. Advances in treatment are improving survival significantly, with some people living more than a decade after being diagnosed.

“All of us don’t know our life expectancy with this disease. The only thing we can do is live our lives to the fullest.”
— A MyAmyloidosisTeam member

In studies from the past 15 years, people with untreated hATTR amyloidosis lived a median of 4.7 years after diagnosis. This means that half lived longer than that, and half lived less than 4.7 years. People with certain genetic mutations and cardiomyopathy (amyloid buildup in the heart) often had shorter survival times.

Today, new treatments are helping people live longer with hATTR amyloidosis. These therapies work by stabilizing TTR proteins or blocking their production in the liver. This prevents harmful fibrils from collecting in organs and causing dysfunction.

Keep reading to learn how life expectancy for people with hATTR amyloidosis has improved in recent years.

How Genetic Mutations Influence Life Expectancy

Hereditary transthyretin amyloidosis is an inherited condition passed down in families. Researchers have identified more than 120 TTR gene mutations (changes) that contribute to hATTR. Two of the most common mutations are called V30M and V122I. In the past, researchers believed that the specific gene mutation would predict a person’s symptoms and how quickly the disease would progress. Now they know that symptoms can vary widely — even among people with the same mutation — and often affect multiple systems in the body.

V30M and Polyneuropathy

The V30M mutation is often associated with polyneuropathy — damage to multiple peripheral nerves (outside the brain and spinal cord). This condition can cause pain, muscle weakness, or loss of sensation, usually starting in the hands and feet. Polyneuropathy can also affect autonomic (involuntary) functions such as digestion and blood pressure regulation. Together, these symptoms can make daily activities like walking, gripping objects, and basic body functions more difficult. If left untreated, this damage can lead to complications that may shorten life expectancy.

V122I and Cardiomyopathy

The V122I mutation increases the risk of transthyretin amyloid cardiomyopathy (ATTR-CM), a condition that affects the heart’s ability to pump blood. This mutation is especially prevalent in African Americans. Amyloid fibrils collect in the heart, disrupting its rhythm and circulation. This buildup can lead to symptoms such as shortness of breath, fatigue, swelling in the legs, and difficulty being active. Without treatment, ATTR-CM can lead to worsening heart failure or dangerous arrhythmias (abnormal heart rhythms), which may affect survival.

New Treatments Extend Lifespan in hATTR Amyloidosis

For many years, liver transplantation was the main treatment option for hATTR amyloidosis. Because the liver produces most of the body’s TTR protein, replacing it with a healthy donor liver can stop the production of abnormal TTR. This slows or even halts disease progression. Liver transplants have significantly improved survival for many people with hATTR amyloidosis.

However, donor livers are limited, and not everyone is eligible for a transplant. In recent years, the U.S. Food and Drug Administration (FDA) has approved new hATTR amyloidosis treatments. Some of these are approved specifically for managing polyneuropathy caused by hATTR, including:

• Eplontersen (Wainua)
• Patisiran (Onpattro)
• Vutrisiran (Amvuttra)

Vutrisiran is also approved to treat ATTR-CM. Other treatments approved for ATTR-CM include tafamidis (Vyndamax) and acoramidis (Attruby). These medications help stabilize the TTR protein and prevent further amyloid buildup in the heart.

Because these therapies are relatively new, long-term data on their impact is limited. As more people with hATTR amyloidosis begin and stay on treatment, researchers will better understand how these medications influence survival over time.

Medications Have Improved Survival Rates

In a large study of more than 3,000 people with hATTR polyneuropathy and the V30M mutation, researchers looked at 10-year survival rates after treatment. They found that 93 percent of people treated with tafamidis were still alive, compared to 85 percent of those who had a liver transplant. Although this wasn’t a direct comparison study between the two treatments, the results suggest tafamidis may provide a meaningful survival benefit, especially when started early.

Another study found that tafamidis improved survival across different age groups. Among people diagnosed before age 50 (early-onset disease), those who took tafamidis were 91 percent less likely to die during the study period compared to those who didn’t receive treatment. For those diagnosed at 50 or older (late-onset disease), the risk of death was 82 percent lower with tafamidis treatment than without it.

Other Factors That Influence Prognosis With hATTR Amyloidosis

Several factors beyond medication can also influence your outlook with hATTR amyloidosis. Age at diagnosis and overall lifestyle, including diet, may influence your health and life expectancy.

When the disease is diagnosed makes a big difference. Research on untreated hATTR amyloidosis shows that people with early-onset V30M mutations and polyneuropathy symptoms live about 12 years after diagnosis. In comparison, those with late-onset disease typically live about seven years without treatment. Early diagnosis and timely access to care can greatly improve these outcomes.

Although there’s no specific diet proven to slow hATTR amyloidosis, the American Heart Association recommends a heart-healthy diet low in sodium for people living with cardiomyopathy or other heart conditions. Diets high in sodium (salt) can raise blood pressure and put extra strain on the heart. Eating well can help reduce the risk of other health issues and support long-term health.

New Treatments Provide Hope for Those With hATTR Amyloidosis

As researchers continue to learn more about hATTR amyloidosis, they’re developing treatments to help manage symptoms, improve quality of life, and extend lifespan. Clinical trials are testing new therapies, while long-term studies are helping researchers understand how existing treatments affect survival over time.

As doctors and researchers learn more about hATTR amyloidosis, they’re developing treatments to help manage symptoms, improve quality of life, and extend lifespan.

You can play an active role in protecting your health. Stay in regular contact with your healthcare team, report any new symptoms, and discuss how your treatments are working — including any side effects. Taking these steps can help you get the care you need to live well with hATTR amyloidosis.

Talk With Others Who Understand

On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.

Do you have more questions about life expectancy with hATTR amyloidosis? Let others know in the comments below.

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