Amyloidosis Information/Causes and Risk Factors

How Common Is Amyloidosis? Who It Affects

Medically reviewed by Fatima Sharif, MBBS, FCPS

Written by Joan Grossman

Updated on October 16, 2026

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Key Takeaways

Amyloidosis is a rare condition where abnormal proteins build up in the body, affecting fewer than 200,000 people in the United States, though experts believe it may be more common than current numbers suggest because it is often misdiagnosed.
There are several types of amyloidosis, and each one tends to affect different groups of people in different ways. AL amyloidosis is the most common type, while some forms are more likely to affect older adults, men, or people with certain genetic mutations or underlying health conditions.
If you have a family history of amyloidosis, an underlying inflammatory condition, or symptoms like shortness of breath, irregular heartbeat, or tingling in your hands and feet, talking with your doctor about your personal risk factors can help you get the right tests and an accurate diagnosis sooner.

View all takeaways

Amyloidosis is a rare disease in which the body makes abnormal proteins, known as amyloid. These proteins build up within the body, leading to tissue and organ damage.

Certain groups of people are more likely to be diagnosed with this condition. Each type of amyloidosis tends to affect different people and comes with its own set of risk factors.

Here’s what you need to know about how common amyloidosis is and which groups are most impacted.

How Rare Is Amyloidosis?

Health experts aren’t entirely certain about the exact number of people affected by amyloidosis, but they believe fewer than 200,000 people in the United States have the condition, or approximately 1 in 1,725 people.

Amyloidosis can resemble other diseases and may be misdiagnosed. Because of this, health experts believe the disease is underdiagnosed. This means that more people may have the condition than the numbers suggest.

As diagnostic tools improve, it’s possible that some types of amyloidosis may be much more common than previously thought.

How Common Are the Major Types of Amyloidosis?

Certain types of amyloidosis are rarer than others, and some groups are more likely to be impacted.

AL Amyloidosis

Amyloid light-chain amyloidosis, also called primary amyloidosis or AL amyloidosis, is generally considered the most common type of systemic amyloidosis. About 4,500 people are diagnosed with this condition in the U.S. each year. The condition is believed to affect approximately 69 people out of a million in the U.S.

AA Amyloidosis

AA amyloidosis, also called secondary amyloidosis, develops as a response to another underlying disease. AA refers to serum amyloid A protein. In the U.S. and other Western countries, the condition is very rare. It’s estimated that 1 to 2 people out of a million are impacted.

Wild-Type ATTR Amyloidosis

In wild-type ATTR amyloidosis (ATTRwt amyloidosis), the body makes transthyretin (TTR) protein, which is unstable and misfolds. This protein clumps together, forming amyloid deposits that often lead to heart problems.

In recent years, diagnosis has significantly improved for ATTRwt amyloidosis that affects the heart — known as ATTRwt-cardiomyopathy (ATTRwt-CM).

One study indicated that ATTRwt-CM may affect as many as 0.46 percent of people between the ages of 65 and 95. At that rate, the condition would no longer be considered a rare disease.

Hereditary ATTR (hATTR), a type of familial amyloidosis, is rarer than ATTRwt amyloidosis and is believed to affect approximately 1 out of 100,000 people in the U.S. and Europe. Worldwide an estimated 50,000 people are believed to have the condition.

How Do Age, Sex, and Race Affect Risk?

Different demographic patterns exist among the different types of amyloidosis. Some types are more common in certain age groups or among certain racial or ethnic groups.

AL Amyloidosis

AL amyloidosis most often affects people who are between the ages of 50 and 80. However, some people are diagnosed with this condition much earlier in life, starting with people in their late 20s. About 67 percent of people with AL amyloidosis are men, according to the Amyloidosis Foundation.

Approximately 86 percent of people with AL amyloidosis are non-Hispanic white, 8 percent are non-Hispanic Black, and 4 percent are Hispanic.

Research has shown that minority groups develop the disease on average four to six years earlier than non-Hispanic white people. One study found that non-Hispanic Blacks tend to have more aggressive disease.

Non-Hispanic Blacks are twice as likely as non-Hispanic whites to develop multiple myeloma, a type of blood cancer that’s linked to AL amyloidosis. Rates of multiple myeloma are only slightly higher in Hispanics than non-Hispanic whites.

AA Amyloidosis

AA amyloidosis typically affects people who have a long-term inflammatory condition, such as an autoimmune disorder or a chronic infection. It can develop at any age and is the most common type of amyloidosis to affect children.

On average, AA amyloidosis develops around age 50. Men have a slightly higher rate of AA amyloidosis than women, according to a study published in the Journal of Internal Medicine.

In Western countries, the condition has a smaller percentage of underlying inflammatory conditions and infections and is linked more to intravenous (IV) drug use and unknown causes.

The Journal of Internal Medicine study noted that AA amyloidosis of unknown cause is more likely to occur in women, older adults, and people with a higher body mass index and obesity.

Wild-Type ATTR Amyloidosis

ATTRwt amyloidosis most commonly affects older men and develops on average at age 75, according to the Amyloidosis Foundation. Although the condition was once considered rare in women, Cleveland Clinic notes that improved diagnostic tools indicate that women may develop ATTRwt amyloidosis at much higher rates than previously thought.

Hereditary ATTR

Hereditary ATTR affects people who have a genetic mutation (change) that is inherited from a parent. If your parent has hereditary amyloidosis, you have a 50 percent chance of having the mutated gene, but that doesn’t mean you will develop hATTR. Men have a greater risk of developing hATTR, per Cleveland Clinic.

Approximately 3 to 4 percent of Black Americans have a genetic mutation known as p.Val142Ile (also called Val122Ile). This mutation can cause hATTR, although some people have the genetic change and don’t develop the condition.

Some countries have higher rates of hATTR, including Japan, Sweden, Portugal, and Ireland.

How Do Other Health Conditions Affect Amyloidosis Risk?

Other medical conditions can increase the risk of developing amyloidosis. These risks vary according to the type of amyloidosis.

Diseases Linked to AL Amyloidosis

About 20 percent of AL amyloidosis cases are linked to multiple myeloma, a type of blood cancer. Both conditions affect plasma cells in bone marrow. Typically, multiple myeloma occurs first in people who have both conditions.

A plasma cell disorder known as monoclonal gammopathy of undetermined significance (MGUS) — which is related to multiple myeloma — is also believed to slightly increase the risk of developing AL amyloidosis.

In rare cases, AL amyloidosis develops due to abnormal bone marrow function in people with lymphoma or leukemia.

Health Conditions Associated With AA Amyloidosis

When the body experiences inflammation or infection, the liver produces serum amyloid A protein, which can lead to amyloid deposits in organs like the kidney, heart, and liver. This can cause AA amyloidosis.

Underlying conditions that are linked to AA amyloidosis include:

Rheumatoid arthritis
Juvenile arthritis
Ankylosing spondylitis
Inflammatory bowel disease, including Crohn’s disease and ulcerative colitis
Ongoing infections such as osteomyelitis, tuberculosis, and infections caused by cystic fibrosis or AIDS
Genetic disorders like familial Mediterranean fever, tumor necrosis factor receptor-associated periodic syndrome, and cryopyrin-associated periodic syndrome
Certain types of cancer, including Hodgkin lymphoma and renal cell carcinoma

Fewer than 1 out of 20 people with inflammatory disorders develop AA amyloidosis.

Conditions Related to Wild-Type ATTR Amyloidosis or Hereditary ATTR

Certain health conditions may be a sign of either type of ATTR, although they don’t cause the disease.

Carpal tunnel syndrome is one condition that can indicate ATTR-CM — ATTR that affects the heart. In people with carpal tunnel syndrome, nerve compression occurs in the small spaces between wrist bones. Carpal tunnel, especially if it affects both wrists, may be caused by amyloid protein deposits that affect the nervous system.

Carpal tunnel syndrome has been found in approximately 20 percent of people with ATTR-CM. Symptoms of carpal tunnel syndrome may start as long as six years before a diagnosis of ATTR.

Heart failure, atrial fibrillation, and other types of irregular heartbeat can also be a sign of ATTR-CM. As many as 70 percent of people with ATTRwt amyloidosis have atrial fibrillation.

What To Do if You’re at Risk

You can discuss your individual risk factors for amyloidosis with your doctor. Based on your medical history, family history, and symptoms, your doctor can determine if you may need certain tests to evaluate your condition.

Because amyloidosis is believed to be underdiagnosed and look like other conditions, it’s important to seek an accurate diagnosis if you experience heart problems or other related conditions.

Signs and symptoms of amyloidosis can vary among individuals and include shortness of breath, unexplained weight loss, blood in urine, irregular heartbeat, tingling in hands and feet, diarrhea, and dizziness.

An early diagnosis can help you get appropriate treatment that can improve your quality of life and outlook.

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