Amyloidosis Program
Utah Amyloidosis Program
The Amyloidosis Program at University of Utah Health and Huntsman Cancer Institute is one of the few programs in the United States specifically designed to treat amyloidosis and provide multi-specialty care at a single location.
Our team of doctors and other medical staff work together to form a customized and detailed plan to care for your unique needs. The goal of our Amyloidosis Program is to not only treat your disease, but to improve your quality of life.
Program Services
Our staff will work with you to create a treatment plan that best suits your needs. Treatment can include medications, lifestyle changes, chemotherapy, or, if needed, organ transplant.
Services
- Comprehensive multi-disciplinary evaluation
- Skin, heart, kidney, and bone marrow biopsies
- Advanced cardiac imaging with cardiac MRI, strain echocardiography and nuclear pyrophosphate scanning
- Advanced tissue staining and analysis
- Innovative treatment options including access to clinical research trials for AL and transthyretin amyloidosis
- Interventional options for treatment including stem cell, heart, kidney or liver transplantation
- Genetic testing and counseling
- Financial counseling
- Nutrition counseling
About Our Program
Amyloidosis is a complicated disorder that can affect multiple systems in your body:
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Bone marrow
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Heart
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Kidneys
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Nervous system
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Lungs
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Skin
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Gastrointestinal (GI) system
Because amyloidosis is so complex, it is important to have a treatment plan specific to you. At U of U Health, you will be evaluated and seen by amyloidosis specialists from different disciplines. This will help our providers better understand your individual needs.
Our Amyloidosis Care Team
Our team members are leading experts in amyloidosis and focus their time and energy in researching and treating the condition.
If you have AL amyloidosis, a hematologist will coordinate your care. If you have ATTR amyloidosis, a cardiologist will coordinate your care. You will also see other specialists as needed.
Our nurses provide safe and comfortable care.They will help make sure you understand your disease, your treatment, and what you need to do to make living with amyloidosis manageable.
Our team of care coordinators and schedulers will help set up your visits in our clinic and in other areas you may need to go.
You will also have access to a variety of professionals:
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Occupational therapists
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Other health care professionals
To help you and your loved ones cope with an amyloidosis diagnosis, we partner with local Amyloidosis Support Groups that offer emotional support.
Find an Amyloidosis Specialist Near Me
Support For Amylodosis Patients And Their Loved Ones
Why Choose University of Utah Health?
U of U Health has year-after-year exceptional rankings as offering the best health care in the nation. It's not a surprise. We believe collaboration throughout our system — from physicians, researchers, biologists, and more — leads to the most imaginative care.
Working together in a rich, diverse clinical environment means our discoveries have a direct impact on the health of our patients.U of U Health isn't satisfied with just offering health care. We want to transform it.
Clinical Trials
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.
Contact Us
We want to help not just our patients, but the amyloidosis community. Feel free to contact us with any questions or advice:
- Physicians – Contact us for new patient referrals for advice on evaluating or managing all types amyloidosis patients
- Patients – Contact us for information about all types of amyloidosis and treatment recommendations, information about our multidisciplinary program approach or to self-refer to our program for amyloidosis management
- Others – Contact us for any information about amyloidosis or our program
For More Information, Call or Email Us:
Sarah Nelsen
New Patient Coordinator
sarah.nelsen@hci.utah.edu
801-213-5723