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About the Amyloidosis Program

  • Nurse Eileen Regan with an amyloidosis patient

  • The Amyloidosis Program at Dana-Farber and Brigham and Women's Hospital is highly specialized and dedicated to the diagnosis, research, and treatment of this underappreciated and often misdiagnosed disease. Our approach to treatment is unique in that it is grounded in science and laboratory-based discovery.

    Our program works closely with patients and referring physicians to provide access to the newest clinical trials, innovative therapies, and a level of quality, compassionate, patient-centered care that is unparalleled in cancer care.

    There are several amyloid diseases. Here, we focus mainly on AL (light chain) amyloidosis — a subtype related to the production of amyloidogenic free light chains by abnormal plasma cells within the bone marrow. Our colleagues at Brigham and Women's Hospital provide care for other forms of amyloidosis, which generally do not require oncologic care.

    Because AL amyloidosis often requires care from multiple specialists, the Amyloidosis Program is staffed with clinicians and scientists who are leaders in the fields of plasma cell disorders, cardiovascular medicine, nephrology, neurology, gastroenterology, hematology, and stem cell transplantation.

    Here, patients are treated by renowned physicians who are intensely collaborative in their approach to treatment planning and research. Treatment is coordinated through the Amyloidosis Program, including participation in clinical trials that are leading to new possibilities for earlier diagnosis, promising new treatments, and successful health outcomes.

    About AL Amyloidosis

    AL amyloidosis is a complex disease due to the production of an abnormal protein, called serum free light chain by atypical blood cells, called plasma cells. These free light chains then form deposits in target organs, causing progressive organ dysfunction. The organs most often impacted are the heart, kidneys, peripheral and autonomic nervous system, soft tissues, and gastrointestinal tract. Once deposited, the amyloidogenic light chains can affect the normal function of these organs and tissue areas and cause health problems, organ damage, and failure.

    Early symptoms include weight loss and fatigue, but a diagnosis is most often made when symptoms related to specific organs appear. Getting an early and correct diagnosis is very important. The disease is rapidly progressive and can be fatal if not promptly diagnosed.

    The cause of AL amyloidosis is unknown; therefore, there are no known risk factors. In the United States, approximately 4,500 new cases are diagnosed every year. The disease is most often found in people between the ages of 50 and 80, and it equally affects both men and women.

    Signs and Symptoms

    AL amyloidosis can present in various ways. The symptoms that patients experience depend upon the organs that are most affected by the abnormal protein deposits and the degree to which these organs are damaged. It is not unusual to find that both the kidney and heart are affected by the disease, and in these cases, congestive heart and/or kidney failure is common. Early diagnosis of AL cardiac amyloidosis is important, since advanced cardiac or multi-organ involvement may limit treatment options and outcomes.

    Some common symptoms for AL amyloidosis are:

    • Fatigue
    • Unintentional weight loss
    • Swelling in lower extremities
    • Shortness of breath with activity
    • Pressure or dull pain in the chest during exertion (similar to what is felt with angina)
    • Breathing difficulty when lying down
    • Dizziness upon standing
    • Skin rash around the eyes
    • Skin and nail changes
    • Easy bruising
    • A feeling of fullness in the stomach
    • Diarrhea or constipation
    • Foamy urine
    • Swallowing difficulties or loss of taste sensation
    • Enlarged tongue
    • Carpal tunnel
    • Numbness or tingling in the hands or feet
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