What Is Amyloidosis?
Amyloidosis is a rare disease caused by abnormally-shaped proteins in your body. These abnormal proteins are called amyloid fibrils. They are are hard for your body to break down and get rid of.
Fibrils can build up and cause damage to your organs or tissues over time. Damage is most common in your liver, kidneys, and heart.
There are different forms of amyloidosis, but the two most common are the following:
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Light-chain, or AL amyloidosis
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Transthyretin, or ATTR amyloidosis, which may be hereditary or acquired
Learn More About Amyloidosis
Symptoms of Amyloidosis
Amyloidosis affects each person differently depending on where the amyloid fibrils collect and how much damage they cause. See your doctor right away if you experience any of these common symptoms of amyloidosis:
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Fatigue
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Weight loss
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Anemia
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Weakness
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Joint pain
Symptoms of amyloidosis depend on where the amyloid fibrils builds up in your body. Amyloidosis can involve many organs or just one:
Heart
- Irregular heartbeat
- Shortness of breath
- Chest pain
- Fluid buildup
Kidneys
- Foamy urine
- Swelling in legs or feet
Liver
- Abdominal pain or swelling
Digestive System
- Diarrhea or constipation
- Blood in stool
- Acid reflux
- Thickened tongue
Nervous System
- Numbness or tingling in arms or legs
- Dizziness or balance problems
- Sweating
- Sexual issues
What Causes Amyloidosis?
Abnormal amyloid fibrils (proteins) are responsible for amyloidosis. Fibrils can collect in any of your organs or tissues. For some people, a specific gene mutation can cause amyloidosis. In others, amyloidosis develops alongside certain chronic conditions or cancers.
How Is Amyloidosis Diagnosed?
An accurate diagnose is key to getting proper treatment. Your care team will assess your symptoms and test for amyloid deposits and organ function.
Diagnosing amyloidosis may require several tests:
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Blood and urine tests to look for amyloid proteins.
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Bone marrow and tissue biopsies (samples) to know if amyloidosis has affected your organs.
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Imaging tests such as an ultrasound, echocardiogram, MRI, or pyrophosphate (PYP) scan to check your heart and organ function.
These tests will help us determine the type of amyloidosis and how far it's progressed.
Treating Amyloidosis
Treatment depends on the the type of amyloidosis you have and the organs affected. Your care team will create a personalized plan based on your needs.
AL (Light-Chain) Amyloidosis Treatment
Treatment for AL amyloidosis may include the following:
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Chemo-immunotherapy medicine will help stop abnormal protein production. You can receive treatment in our clinic through an IV or an injection or take them in pill form at home.
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Bone marrow transplants replace damaged cells. We collect healthy stem cells from you or a donor. We then use medicine to destroy your affected bone marrow and replace it with the healthy cells. Receiving a bone marrow transplant will require you to stay in the hospital or live close by.
ATTR (Transthyretin) Amyloidosis Treatment
Treatment for ATTR amyloidosis may include the following:
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Medications that reduce the production of amyloid protein.
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Organ transplants, such as heart, liver, or kidney transplants when necessary. We will work closely with you and a transplant team to guide you through this process.
Lifestyle changes such as diet and exercise habits can improve how you feel. They can also help make your treatment more effective, and reduce side effects. Talk to your care team about how to make changes to make living with amyloidosis more manageable.
Supportive Care & Lifestyle Treatments
We offer a multidisciplinary approach to manage your symptoms, reduce your side effects, and improve your quality of life. Lifestyle changes like improved diet and gentle exercise can also help. Learn more about our amyloidosis program.
Contact the Amyloidosis Program
Sarah Nelsen
Email: Sarah.Nelsen@hci.utah.edu
Phone: 801-213-5723
Fax: 801-213-0600
We're here to support patients, caregeivers, and providers. Contact us for any of these reasons:
- Referrals or care coordination
- Questions about treatment or diagnosis
- Support resources and education
Find an Amyloidosis Specialist Near Me
Clinical Trials
At 91麻豆天美直播, patients have access to new therapies that may not yet be widely available through clinical trials. We may offer you the choice to take part in a research study or clinical trial. These studies and trials are optional and do not change the quality of your care. Whether or not you participate in a trial, we will give you the best treatment and care available.
For more information about clinical trials, contact the Utah Amyloidosis Nurses at amyloidosis@hci.utah.edu.
CARDIO-TTRansform
A Study to Evaluate the Efficacy and Safety of AKCEA-TTR-LRx in Participants With Transthyretin-Mediated Amyloid Cardiomyopathy (ATTR CM)
A Study to Evaluate the Efficacy and Safety of Daratumumab
ATTR Expanded Access Program (EAP)
Meet Our Patients
The Intersection of Medical Neglect and Good Fortune
Laurence Parker, an associate dean in the Honors College at University of Utah, knew something wasn't right. Tests confirmed he had heart hereditary amyloidosis. After his diagnosis, he went from being a professor with a new job to a patient in need of a heart transplant.
New Heart Saves Patient With Amyloidosis
In 2017, Ray Groth, a competitive cross-country skier, was diagnosed with amyloidosis, a very serious but rare heart condition that has no cure. Back then, there was no way to slow or stop the disease progression. Without a heart transplant, his condition would become life-threatening.
Patient Resources
- Annual Amyloidosis Symposium, October 31, 2025 (Details to come)