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What is Amyloidosis?

Amyloidosis is a rare, organ-debilitating disease that causes organs and tissues, including the heart, kidneys, skin, stomach, large and small intestines, nerves and liver to thicken and eventually lose function.

It occurs when a person's antibody-producing cells do not function properly and produce abnormal protein clumps, called amyloid deposits, that damage the affected area.

With early diagnosis and treatment, we can help you manage this disease.

Signs You Should Get Help for Amyloidosis

Amyloidosis symptoms depend on which area of your body is affected. See your primary care provider if you experience any of these symptoms:

  • Difficulty breathing (dyspnea)
  • Low exercise tolerance
  • Arrhythmias
  • Hypotension
  • Fatigue
  • Irregular heartbeat
  • Skin changes, such as easy bruising
  • Swelling of the arms, legs and tongue
  • Weight loss

If your doctor suspects you have amyloidosis, they may refer you to an amyloidosis specialist. UofL Physicians – Cardiology has many cutting-edge therapies and trials for patients with cardiac amyloidosis. With treatment, most patients can have a better quality of life and increased survival time. Your prognosis and treatment depend on which areas of your body are affected.

Diagnosis & treatment of Amyloidosis

There are three types of amyloidosis:

  • Primary amyloidosis: This is the most common form and has no known causes. It can lead to several conditions, including carpal tunnel syndrome, congestive heart failure and kidney failure.
  • Secondary amyloidosis: This occurs due to the presence of another disease, particularly chronic infections or inflammatory diseases such as cystic fibrosis, Hodgkin lymphoma, multiple myeloma and tuberculosis.
  • Familial amyloidosis: This is passed on within families through genes, often affecting the central nervous system and kidneys.

Specialized testing may need to be done to determine the appropriate diagnosis including:

  • Echocardiogram with strain
  • Pyrophosphate nuclear SPECT
  • Cardiac MRI
  • Cardiac CT
  • Biopsy (including endomyocardial where needed) with tissue proteomics

If you are diagnosed with amyloidosis, your care team may include a variety of experts, such as specialists in hematology/oncology, cardiology, nephrology, neurology etc. Organ failure may result if your heart or kidney is damaged, so having a multidisciplinary team to care for you is crucial.

Treatment of amyloidosis related to hematological malignancies is directed by a hematologist/oncologist and will focus on destroying abnormal cells in the blood and may include the following:

  • Chemotherapy
  • Bone marrow transplant
  • Targeted therapies
  • Dialysis
  • Heart or kidney transplant

If another disease causes amyloidosis, we will treat that condition aggressively to try to slow the progression of amyloidosis.

With partners in oncology, nephrology, neurology and hematology, we're able to offer comprehensive treatment all within UofL Health and UofL Physicians.

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