Amyloidosis is a rare disease that occurs when abnormal protein, called amyloid, deposits in your organs. There are over 30 types of amyloidosis.
The disease can affect the heart as well as the kidney, liver, nervous system and gastrointestinal tract. Some forms of amyloidosis affect one single organ while others can affect more than one.
Because amyloidosis can affect many parts of the body, you may need to meet with physicians from multiple specialties.
Led by Drs. Marcus Anthony Urey, Anya Narezkina, Eric Adler and Paul Kim, our center provides a comprehensive approach with access to new and advanced therapies, including clinical trials.
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Hematology/Bone Marrow Transplant
Diagnosis and Treatment
Symptoms of cardiac amyloidosis are similar to those of
heart failure. Amyloidosis is diagnosed by a thorough medical history and physical exam. A tissue biopsy is often needed. In some cases, the diagnosis can be made with lab testing and radiographic imaging.
Your treatment will depend on the type of amyloidosis you have. Some patients will require chemotherapy while others may need more targeted amyloid therapies.
When the heart is involved, diuretics or blood thinners may be needed. Approved treatments are available that are specific to the type of amyloidosis you have. Your provider will discuss this with you at the time of consultation. In rare cases, a bone marrow or organ transplant may be needed.
Amyloidosis and Genetic Testing for Families
Some forms of amyloidosis are hereditary, meaning they can affect multiple generations of families. Genetic counseling is available for you if a genetic mutation is identified. Our team of experts can also help family members get screened for genetic mutations and connect them with experts even if they live outside the San Diego area.
Groundbreaking Treatment for Hereditary Transthyretin Amyloidosis
UC San Diego Health is the first in the nation to offer a new injectable medication to patients with nerve damage caused by hereditary transthyretin amyloidosis. Previously, patients with this disease needed intravenous infusion therapy sessions every three weeks. Now they can get one injection every three months to stop the disease from progressing.
Preparing for Your Appointment
Please bring all medical records you have to your first appointment even though we do our best to get them sent to us and reviewed ahead of time. One of our amyloidosis specialists will meet with you at the first visit and provide referrals and coordination of care as needed.
Traveling to UC San Diego Health for Treatment
Since amyloidosis runs in families, we try to coordinate appointments for individual patients as well as their family members, as needed. This is especially helpful for those who are traveling from outside the San Diego area.
As an academic medical center, UC San Diego Health is a leads the way in basic science and clinical research while providing excellent care for patients with amyloidosis. Our providers research specific types of amyloidosis. The knowledge they gain can lead to discovery of new treatments.
We also conduct clinical trials for patients with cardiac amyloid disease to evaluate new ways to reduce the effects on your heart.
More about clinical trials at UC San Diego Health