Amyloidosis Program

Our team of world-renowned specialists has extensive experience caring for people who have amyloidosis. This complex disease can affect the heart, kidneys, gastrointestinal tract, nervous system, and other organs. At the Amyloidosis Program, part of NYU Langone’s Perlmutter Cancer Center, we bring together the expertise of clinicians from many disciplines to develop a comprehensive treatment plan that addresses your specific healthcare needs.

Amyloidosis is rare and often goes undiagnosed until it is very advanced. Depending on the organs affected, symptoms can vary widely and mimic other diseases of the heart, kidneys, gastrointestinal tract, and bone marrow. When left untreated, amyloidosis can damage the organs and their ability to function.

There are many different types of amyloidosis, including hereditary and nonhereditary forms. Amyloidosis may also occur as the result of another disease, such as bone or blood cancer. Our specialists conduct an extensive evaluation to diagnose even the rarest subtypes of the condition.

Our comprehensive evaluation also takes into account all the ways amyloidosis can affect the body. Our specialists at NYU Langone Heart provide expert care for cardiac amyloidosis, which affects heart function.

Our experts also manage systemic AL amyloidosis, which typically arises from the bone marrow and can affect all the organs of the body, especially the kidneys and heart. The generalized nature of this form of the disease requires a team of doctors with expertise in different specialties, but care is often led by a hematologist with expertise in amyloidosis.

You are first evaluated by a cardiac specialist or by a hematologist, depending on the type of amyloidosis you likely have. They collaborate with other specialists, including bone marrow transplant experts, nephrologists, neurologists, gastroenterologists, genetic counselors, and physical medicine and rehabilitation doctors to create a care plan tailored to your specific needs.

We also have a dedicated team of social workers to assist you throughout your treatment journey. If you are traveling to the United States from abroad for our care, NYU Langone’s International Patient Services can help coordinate your visit.

What Causes Amyloidosis

Amyloidosis occurs when the body produces misfolded proteins called amyloid fibrils that cannot be broken down naturally, causing a buildup in various organs. Amyloid fibrils are usually produced by one of two sources: the bone marrow or the liver.

When amyloid fibrils originate from bone marrow, a person may have a condition called AL amyloidosis that is acquired, not inherited. In AL amyloidosis, also known as primary amyloidosis, amyloid fibrils are deposited in the organs or tissues, causing them to thicken and affecting their function. Most often, AL amyloidosis affects the heart, kidneys, and nervous system, but other organ systems may also be involved.

Amyloid fibrils produced by the liver result in transthyretin (TTR) amyloidosis. TTR amyloidosis has two forms: hereditary TTR and wild type, a nonhereditary form. TTR amyloidosis commonly affects the nerves and heart.

To make a diagnosis, we evaluate your medical history and symptoms and recommend advanced diagnostic tests, such as a blood or urine test to detect the presence of amyloid proteins, or a biopsy to look for amyloid deposits.

Treatment for Amyloidosis

To manage AL amyloidosis, a hematologist may recommend targeted drugs, a blood stem cell transplant, or sometimes a bone marrow transplant to reduce the level of abnormal amyloid-producing cells in the bone marrow. You may also be referred to a cardiologist or other specialist, depending on whether the heart or another part of the body is involved.

For TTR amyloidosis, we may recommend medications to reduce or halt production of the transthyretin protein or prevent the deposit of the protein in tissues. TTR amyloidosis most commonly affects the heart, and we refer you to a cardiologist or other specialist who can help you manage symptoms and provide treatment. Some of the many symptoms of TTR amyloidosis include shortness of breath, irregular heartbeat, loss of sensation in the hands or feet, and muscle weakness. Our team, which includes physicians, pharmacists, and nurse practitioners, can also help you access novel treatment options, including the latest clinical trials.

If the heart, liver, or kidneys are severely affected because of AL or TTR amyloidosis, we can refer you to our specialists at the NYU Langone Transplant Institute to determine whether a transplant is an appropriate option for you.

Patient Support Group

The Amyloidosis Program offers a free patient support group at our Manhattan location. These meetings provide a forum where patients can connect with each other and learn more about their condition through informal talks offered by our experts. To register for our next meeting, please email us at nyucardiacamyloid@nyulangone.org or call 646-501-0119, extension 4.

Make an Appointment

To make an appointment at our locations in Manhattan or on Long Island, please call 646-501-0119.

Referrals

To refer a patient, please call 646-501-0119, extension 4; email nyuamyloidreferrals@nyulangone.org; or fax 929-455-9507.