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Amyloidosis

At the Washington University Amyloid Center, we bring together experts across specialties to diagnose and treat patients with amyloidosis. 

Our Amyloid Center is a Center of Excellence, which means our physicians conduct ongoing research to improve diagnosis and treatment of this complex disease. This gives our patients access to comprehensive amyloidosis therapy and cutting-edge clinical trials.

WHAT IS AMYLOIDOSIS?

Amyloidosis, also called amyloid, is a disease caused by abnormal protein deposits throughout the body. It affects each patient differently, but it often interferes with the normal function of the heart, kidneys, lungs, liver, digestive tract, nerves and muscles.

Because amyloidosis can affect multiple organ systems in the body, it often requires diagnosis and treatment from multiple specialists. Our team of experts includes cardiologists, hematologist/oncologists, neurologists, nephrologists, gastroenterologists, hepatologists, pulmonologists and pathologists.

Learn more about amyloidosis symptoms and diagnosis.

TYPES OF AMYLOIDOSIS

There are over 30 different types of amyloid, but the two most common types are AL (light chain amyloid) and TTR (transthyretin amyloid). Identifying the specific subtype is important so your care team can determine the best treatment plan. 

AL (Light Chain) Amyloidosis

AL amyloidosis is also called immunoglobulin light chain amyloidosis, or primary amyloidosis. It is a disorder of plasma cells in the bone marrow responsible for making antibodies to help the body fight infection. This is a blood/bone marrow disorder closely related to a cancer known as multiple myeloma.

The treatment of AL amyloidosis is primarily managed by a hematologist/oncologist. Other specialists may provide care for symptoms related to amyloid deposits in other organs.

TTR (Transthyretin) Amyloidosis

TTR amyloidosis results when the protein transthyretin (TTR), which is produced in the liver, forms abnormal fibrils that are deposited as amyloid in various organs. This type of amyloid primarily affects the nervous system and heart and is managed by a neurologist and cardiologist. Other organ systems can be affected, however, so other specialists may be part of your care.

TTR amyloidosis may be hereditary, leading to 2 main diseases: familial amyloid polyneuropathy (FAP) and familial amyloid cardiomyopathy (FAC). Identifying a mutant gene in these situations is important for treatment planning.

TTR amyloidosis can also develop in people with normal transthyretin genes. This is called ‘wild-type TTR amyloidosis’ or ‘senile systemic amyloidosis.’ This form is not hereditary but still requires treatment.

If you've been diagnosed with hereditary TTR and have started treatment, you're invited to complete an online survey from the Amyloidosis Research Consortium (ARC).

AA (Secondary) Amyloidosis

AA or secondary amyloidosis occurs when the protein serum amyloid A (SAA) forms amyloid fibrils in response to infection and inflammation. AA amyloidosis is less common and can be associated with chronic infections and autoimmune diseases (such as systemic lupus erythematosus) and autoinflammatory diseases (such as familial Mediterranean fever).

Depending on the underlying diagnosis, it is primarily managed by a rheumatologist or infectious disease specialist.

Organ-Specific (Localized) Amyloid

Rather than occurring in a systemic form, amyloidosis can involve only a single organ, like the bladder, skin, lung and membrane of the eyes. Organ-specific amyloid is typically treated with therapy to the affected organ. Diagnostic tests will determine the amyloid type and assess possible systemic involvement.

Other Types of Amyloidosis

There are many other less common types of amyloidosis, some of which are hereditary and some of which occur randomly. Other protein subtypes of amyloid can include:

  • Leukocyte chemotactic factor 2
  • Apolipoprotein
  • Insulin
  • Beta-2 microglobulin

Contact Us

To make an appointment with a Washington University amyloidosis specialist at Barnes-Jewish Hospital, call [Dynamic_Phone_Number].


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