MUSC Health Amyloidosis Center of Excellence

Amyloidosis is a rare disease in which misfolded proteins deposit over time into several tissues and organs throughout the body. Due to this protein deposition, normal organ functions become impaired and may cause symptoms.

Cardiac amyloidosis also known as “Stiff Heart Syndrome” is a condition where amyloid builds up in the heart and causes the heart to become stiff and unable to relax to fill with enough blood. This disease typically causes “congestive heart failure.” When this occurs, you may have problems like swelling of the legs or feet, shortness of breath, and increased fatigue. Within the last few years, studies have shown that 10-15% of patients who have “Heart Failure with preserved Ejection Fraction” (HFpEF) have a form of amyloid in their hearts.

The Amyloidosis Center of Excellence at MUSC Health is the only center of its kind in the region. It is one of a small handful of programs in the nation dedicated to treating patients with symptoms of amyloidosis including heart, kidney, nerve, gastrointestinal and joint disease.

The program is expanding thanks to generous private donors giving to the MUSC Amyloidosis Center under the guidance of its director, Dr. Daniel P. Judge. MUSC is truly honored by these generous gifts to help educate and bring awareness to our community, to continue clinical research for individuals with this condition, and to diagnosing patients with this under- recognized disease.

Amyloidosis Center at the MUSC Health Heart & Vascular Center: Why Choose Us?

We offer an integrated team of different specialists committed to help improve your quality of life. MUSC is the only academic medical center in South Carolina with doctors recognized nationally and internationally for research, clinical work, and the expertise in detecting suspected and diagnosed amyloidosis.

When you come to us for suspected or diagnosed amyloidosis you will benefit from:

  • Team-Based approach to treatment: We are one of the only few dedicated amyloidosis centers in the nation with a comprehensive team of specialists including cardiologists, nephrologists, hematologist/oncologists and neurologists who focus on helping patients with amyloidosis. They work together to provide services including diagnosis, opportunities for treatment plans, drug trials, rehabilitation and life-long care. Meet the team

  • History of Excellence: Our team is composed of experts in amyloidosis ranging from clinicians to researchers. With such extensive academic experience, it allows for rapid exchange of knowledge for the benefit of the patient.

  • Exclusive Treatment Options: We are an active site working with governmental, non-profit, and pharmaceutical organizations to offer the most exclusive and modern therapies available. Our doctors’ involvement in clinical trials gives you access to treatments not available in many places.

    In addition, we are the only medical center in South Carolina performing heart transplants. Learn more on the advanced heart failure program and our cardiac rehab program to help strengthen your heart.

  • Reliable and convenient medical monitoring: Systemic amyloidosis requires close life-long monitoring. As a team of specialists, we also involve your primary-care physicians to help aid in recommendations and improve treatment convenience. We have regional clinic locations and an extensive network of specialists who can provide additional follow-up when you may not be able to visit us at MUSC.

    Learn about telehealth visits for new and established patients.

Cardiac Amyloid Treatments at the MUSC Health Heart & Vascular Center

The Amyloidosis Team tailors to your correct treatment plan based on the type of amyloidosis and its presentation.

Amyloid Light Chain (AL) amyloidosis

  • Sometimes associated with multiple myeloma, a cancer of plasma cells.
  • Also called “Primary amyloidosis”
  • New treatments with our hematologist/oncologist specialists.
  • MUSC is South Carolina’s leading center for treatment with bone marrow and stem cell transplantation.

Transthyretin Amyloid Cardiomyopathy (ATTR-CM)

  • Hereditary type: can be inherited or run in your family
  • Wild-Type: can occur for no known reason, usually in people over 60 years of age

Other forms of amyloidosis

  • Other genetic and inherited types (AANF, AB2M, AGEL, ALECT2, ALYS, APOA1, APOA2, APOAC3)
  • Inflammatory amyloid (AA)

Clinical Trials

  • There are several clinical trials being conducted at MUSC for Transthyretin Amyloid Cardiomyopathy (ATTR-CM) with hereditary-type and wild-type amyloidosis. Our doctors’ active participation in national clinical trials gives you access to the latest, most advanced medications available.
  • Learn more about two of our current available clinical trials at clinicaltrials.gov/ct2/show/NCT03860935 and clinicaltrials.gov/ct2/show/NCT03536767.

Cardiac Amyloidosis Registry

The Registry is our commitment to expand the Amyloidosis program by involving patients at a research level. We will soon begin enrollment for participants with suspected and diagnosed amyloidosis to take part in a registry for collection of data to find ways to treat and diagnose patients at an early stage.

In addition to standard options such as medication management, we also offer these specialized treatments:

Heart Transplants

Since performing South Carolina’s first heart transplant in 1987, our transplant specialists at MUSC Health have saved the lives of more than 450 South Carolinians with severe heart failure. We continue to be the state’s only program for cardiac transplantation.

Our comprehensive program is designed to address all of your cardiac needs. We offer the latest bridge-to-transplant devices to support your heart while you wait for a transplant. After a transplant, you can improve your health through our heart-strengthening cardiac rehab program. Learn more about heart transplants at MUSC Health.

CardioMEMS™ for Heart Failure Surveillance

MUSC Health offers a specialized program for the CardioMEMS home monitoring system for patients with heart failure. Our heart failure team uses information transmitted from this implanted device to monitor your heart health from the convenience of your home.

These daily readings enable our team to detect warning signs of heart failure before symptoms appear. Our doctors adjust treatment as needed to help you avoid hospitalization and enhance your quality of life.

Cardio-Oncology

Chemotherapy for many types of cancer can be stressful for your heart. Cardiologists and Nurse Practitioners at the MUSC Health Cardio-Oncology Program work with your cancer doctor to protect your heart before, during, and after cancer treatments. Learn more about cardio-oncology care at MUSC Health.

Heart Valve Problems

In addition to traditional open-heart surgical procedures to repair or replace faulty heart valves, we also offer minimally invasive catheter-based treatment options. These catheter procedures are increasingly successful in repairing or replacing heart valves. Learn more about Structural Heart & Valve Care at MUSC Health.

Other Care Team Members

Hannia Ramos, M.D.
Program Coordinator

Amanda Fowler, FNP
Nurse Practitioner

Blaithin McMahon, M.D.
Nephrologist

Additional Resources

MUSC Amyloidosis Support Group
Stay tuned for our first local support group meeting in mid Fall 2020.

Amyloidosis Support Group
Join the amyloidosis support group to be part of the nationwide community.

My Amyloidosis Pathfinder
Our MUSC Amyloidosis Center has teamed up with ARC to simplify patient-provider visits and communication with our amyloidosis team for treatment plans and goals tailored to your needs.

Look for our MUSC facility to sign up and use the feature of My Appointment Companion with your next appointment visit.

Donations
Donations can be made to the Amyloidosis Center at MUSC.