Amyloidosis is a potentially serious and very rare disease that involves abnormal protein (amyloid) building up in your tissues and organs.
Fred Hutchinson Cancer Center offers collaborative amyloidosis treatment from a team of experts who can address the wide range of health care needs you may have.
In amyloidosis, protein deposits can build up throughout your body, causing a broad spectrum of symptoms. It can lead to organ failure, which may be fatal.
Treatment for amyloidosis is complex and must be tailored to each individual, so it’s important to be treated at a specialized center with expertise in this disease. But because amyloidosis is rare, many hospitals and clinics do not have much experience with it.
The signs and symptoms of amyloidosis can vary widely depending on how many organs and which organs are affected by protein deposits. Some people don't have symptoms at all or don't have them until the disease is advanced.
Here are a few examples of the range of possible symptoms.
Amyloidosis can be difficult to diagnose because it’s such a rare disease and the signs and symptoms may be similar to many other more common conditions.
The average hematologist-oncologist in the community may see only one or two people with amyloidosis in their entire career. Unfortunately, it’s fairly common for patients to visit several physicians over many months before being accurately diagnosed.
To diagnose your condition:
Researchers at Fred Hutch are working to develop our own mass spectrometric analysis for amyloidosis — the lab studies needed to diagnosis the condition and identify the type.
Additional tests, like an ultrasound, electrocardiogram or echocardiogram, can help your team understand how amyloidosis is affecting your body.
There are many different causes of amyloidosis. In the most common type, light chain amyloidosis, plasma cells in your bone marrow become abnormal and secrete an abnormal protein into your blood that can build up in your heart, kidneys, nerves and other organ systems.
Amyloidosis is more common after age 40 and more common in men than women. In some people it is linked with another disease, such as multiple myeloma.
The familial form runs in families.
Most people with amyloidosis have no known risk factors.
Physicians estimate about 4,000 people develop primary amyloidosis in the U.S. each year, but it’s difficult to say because the disease often goes undiagnosed or the diagnosis is delayed. Secondary amyloidosis and familial amyloidosis are much less common.
Support can be especially helpful when you have an uncommon condition, like this one. The Amyloidosis Support Groups and Amyloidosis Foundation websites can help connect you with support in the Pacific Northwest or around the country.
There are many resources online for learning about your disease. Health educators at the Fred Hutch Patient and Family Resource Center have compiled a list of trusted sources to help you get started.
Whether you are newly diagnosed, going through treatment or know someone with cancer, our staff are available to tailor personalized resources and answer questions about support options in the community.
Our list of online resources provides accurate health information from reliable and reputable sources, like the National Cancer Institute (NCI), the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN).
Learn more about the different types of amyloidosis, find treatment centers and clinical trials, get toolkits for caregivers and connect with the community of patients and families affected by amyloidosis.
Learn about amyloidosis types, symptoms, diagnosis, treatment options, treatment centers, and online support resources across the United States.
NORD’s Rare Disease Database provides brief introductions for patients and caregivers to specific rare diseases. Here you can find an overview of amyloidosis.
Providing information about amyloidosis and guide you through the next steps after diagnosis.