Overview & Treatments

Overview & Treatments

Cleveland Clinic is dedicated to being a leader in patient experience, clinical outcomes, research, and education for patients with amyloidosis. Specialists in our Cancer Center and Sydell and Arnold Miller Family Heart & Vascular Institute work together to provide the most advanced treatment options for patients with amyloidosis. U.S. News & World Report consistently names Cleveland Clinic as one of the nation’s top hospitals in its annual “America’s Best Hospitals” survey and has named Cleveland Clinic’s heart program No. 1 in the nation since 1995.

A Team Approach

Depending on the symptoms and type of amyloidosis, there will be different specialty doctors involved. The initial evaluation will be done by one of our amyloid specialists in cardiology or cancer care, with possible additional involvement of specialists in neurology, nephrology, gastroenterology, hematology/oncology, genetics and primary care.

Together, our amyloid specialists explore all options and tailor the most appropriate treatment plan for each patient, taking into consideration your goals and quality of life. Each patient will also have a patient care coordinator to help coordinate appointments with the various specialists involved. The Amyloidosis Center is led by co-directors Jason Valent, MD, from Hematology and Medical Oncology, and Mazen Hanna, MD, from Cardiovascular Medicine.

What is amyloidosis?

Amyloidosis (am-uh-loy-doh-sis) is a protein disorder. In this disease, proteins change shape (misfold), then clump together and form amyloid fibrils which deposit in organs. As amyloid fibrils build up, the tissues and organs may not work as well as they should.

Proteins change shape (misfold) then clump together and form amyloid fibrils.

Our bodies make several proteins that can cause amyloidosis. To choose the right treatment, it is very important to know the exact protein that is causing the disease. The two most common types are light chain (AL) and transthyretin (ATTR) amyloidosis.

What are the types of amyloidosis?

There are several types of amyloidosis. Two of the most common types are light chain (AL) amyloidosis and transthyretin (ATTR) amyloidosis.

AL Amyloidosis

Light chains are pieces of antibodies made by white blood cells, specifically plasma cells, in the bone marrow. In AL amyloidosis, a group of plasma cells make too many light chains, which misfold and clump together to form amyloid fibrils. The fibrils are then deposited in organs.

The most common organs affected are the heart and kidneys. Light chain amyloidosis can also affect the stomach, large intestine, liver, nerves and skin.

Treatment: Treatments for patients with AL amyloidosis include various medications. Most patients take one or two chemotherapy drugs plus steroid medication. The medications work together to destroy the plasma cells that make the light chain proteins. A doctor who specializes in blood disorders (hematologist) will create a treatment plan for you.

ATTR Amyloidosis

Transthyretin (trans-thigh-re-tin), also called TTR, is a protein made by the liver that helps carry thyroid hormone and vitamin A in the blood. Normally, TTR is made up of four identical parts. However, in ATTR amyloidosis, the protein becomes unstable, breaks apart, and deposits in the heart and/or the nerves.

There are two types of ATTR amyloidosis: hereditary (familial) and wild-type. The hereditary type can be passed from one generation to the next. The wild type cannot be passed on to family members.

Treatment: There are currently three medications approved by the Food and Drug Administration to treat patients with ATTR amyloidosis. There are also upcoming therapies that act at different points in the disease pathway to address the underlying cause of ATTR amyloidosis. Ask your doctor for more information.

AA Amyloidosis

Another form of amyloidosis not commonly seen in the United States, however more common in other countries, is AA amyloidosis.

Our Doctors

Our Doctors

The Amyloidosis Center brings together specialists in cardiology, cancer care, neurology, nephrology, gastroenterology, hematology/oncology, genetics and primary care.

Our Medical Team

Co-Directors

Cardiologists

Hematologists

Nephrologists

Tarek Ashour, MD
Tarek Ashour, MD
Associate Staff
Richard Fatica, MD
Richard Fatica, MD
Department Vice Chair

Neurologists

Florida Medical Team

We also offer amyloidosis treatment at Cleveland Clinic Florida’s Cardiac Amyloidosis Center.

Care Team

Care Team

Along with our physicians, Cleveland Clinic’s Amyloidosis Center is comprised of several other valuable team members who assist patients throughout their cancer treatment.

Care Coordinators

Kim Bischel, RN, BSN Kim Bischel, RN, BSN
Heart Failure Care Coordinator
Mary Ann Karam, RN, BSN Care Coordinator Mary Ann Karam, RN, BSN
Care Coordinator
Janice Reed, RN, BSN Care Coordinator Janice Reed, RN, BSN
Care Coordinator
Kristen Schleuter, RN Care Coordinator Kristen Schleuter, RN
Care Coordinator

Genetic Counselors

Christina Rigelsky, MS Christina Rigelsky, MS
Licensed Genetic Counselor
Brittany Psensky, MS Brittany Psensky, MS
Licensed Genetic Counselor
Diane Clements, MS Diane Clements, MS
Licensed Genetic Counselor

Pharmacy Team

Kathleen Faulkenbert, PharmD, BCPS Kathleen Faulkenbert, PharmD, BCPS
Clinical Pharmacy Specialist
Nathan Rosko, PharmD Nathan Rosko, PharmD
Clinical Pharmacy Specialist
Lucy West, PharmD, BCCP Lucy West, PharmD, BCCP
Heart Failure and Heart Transplant Clinical Pharmacist
Brad Williams, PharmD, BCPS Brad Williams, PharmD, BCPS
Clinical Pharmacy Specialist

Research Team

Kathleen Stefunek, RN Research Nurse Kathleen Stefunek, RN
Research Nurse
Support & Resources

Support & Resources

Cleveland Clinic Amyloidosis Center Facebook Group

The goal of our facebook group is to provide disease education and keep you connected with the latest treatment options, community resources, and upcoming events. It also provides a place where you can connect with others who have amyloidosis or those who are caring for someone with the disease.

Podcasts

Listen to episodes of Cleveland Clinic’s podcasts Cardiac Consult and Love Your Heart about amyloidosis topics:

Patient Stories

Hear the inspiring stories of real Cleveland Clinic patients living with Amyloidosis:

ConsultQD

Find helpful posts from Cleveland Clinic’s site for physicians and healthcare professionals. Discover the latest amyloidosis research insights, innovations, treatment trends and more:

Clinical Trials & Research

Clinical Trials & Research

Light Chain (AL) Amyloidosis

Current/Upcoming Trials:

  • No active trials at this time

Completed/Not Recruiting:

Transthyrtein (TTR) Amyloidosis

Current/Upcoming Trials:

Completed/Not Recruiting:

Other Amyloidosis Trials

Current/Upcoming Trials:

Medical Professionals

Medical Professionals

Cleveland Clinic is committed to working with you to provide the best care for your patients. Our team is also dedicated to the training and education of medical professionals to advance care and research of amyloidosis.

To refer a patient, please contact our Referring Physician Hotline, available 24 hours a day, 7 days a week, for all your needs, by calling 855.REFER.123 (855.733.3712).