What Is Amyloidosis, And How Can It Be Managed?

To understand the rare disease Amyloidosis, you have to understand the underlying cause.

When bone marrow produces an abnormal protein, called “amyloid,” it can be deposited in virtually any organ or tissue in the body. In some cases, it can cause organ failure, which results in death. The organs most commonly affected are those in the digestive tract, the heart, the liver, and the spleen. To date, Amyloidosis is incurable; however, there are treatments that can help to limit the production of amyloid.

Just how rare is Amyloidosis? Doctors believe there are many undiagnosed cases, but 1,500 to 2,000 people in the United States are diagnosed with it annually. A bone marrow aspiration and biopsy are usually the deciding tests, but doctors may also do blood work to determine possible hereditary factors.

Treating Amyloidosis often requires a multidisciplinary team of doctors, because many different organs can be affected at the same time.

Some of the drugs under investigation as possible treatments for this rare disease are: bortezomib, melphalan, and dexamethasone. Chemotherapy is currently used as a treatment, and other research is underway.

For more information, contact the Amyloidosis Foundation.

If you have Amyloidosis and are interested in finding out about clinical trials, visit Cancer.net.

What can YOU teach the Patient Worthy community about Amyloidosis? Leave a comment below!

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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