Resources

Sean, a patient with hereditary ATTR amyloidosis, describes his journey to diagnosis. Over an agonizing seven-year journey to diagnosis, Sean received bilateral carpal tunnel surgery, a hospital trip after a dire cardiac event, and saw multiple doctors fail to diagnose his amyloidosis. In his story, Sean shares the reason he is optimistic about the future and advice he has for others living with hereditary ATTR amyloidosis or still searching for a diagnosis.    

Ralph, a patient with Wild-Type ATTR amyloidosis, describes his journey to diagnosis. A commercial and technical diver, Ralph’s bilateral carpal tunnel was often attributed to his career. After multiple doctors misdiagnosed Ralph, one physician sent a tissue sample out for a biopsy, which led to Ralph’s amyloidosis diagnosis. From there, a journey of self-education, empowerment, and treatment have helped him take on amyloidosis and keep living, despite the challenges of this difficult disease.    

In this ARC Talks webinar, Sandy Wong, MD, and Nancy Wong, NP, discuss autologous stem cell transplantation as a therapy choice for AL amyloidosis patients. Dr. Wong outlines each phase of the process and goes over the function of stem cell transplants in the context of medical care. Nancy Wong discusses how to prepare for a stem cell transplant while highlighting key care considerations for each phase of therapy. Her concluding remarks focus on important considerations during the recovery period.

In this ARC Talks webinar, Kristen Hsu, Executive Director of Research, and Sabrina Rebello, Research Manager, provide an overview of ARC’s research programs, share findings from our 2022 community survey results, and highlight the future direction of ARC’s research.

In this ARC TALKS webinar, amyloidosis expert Dr. John L. Berk presents the most current treatment options for ATTR amyloidosis. Dr. Berk also discusses clinical trials and future research. The webinar concludes with a Q and A session.

In this ARC TALKS webinar, Briana Pineau, MS, RD, LDN, a registered dietician at Boston Medical Center, discusses the role nutrition can play in the management of amyloidosis symptoms. In addition to covering gastrointestinal involvement associated with various types of amyloidosis, Briana covers the broader health benefits of a balanced diet.

Many types of amyloidosis can affect patients’ gastrointestinal (GI) tract, causing painful, annoying, or even debilitating symptoms. It is common for patients with amyloidosis to experience GI involvement and in fact, some patients may have GI-related symptoms as their most predominant sign or chief complaint.

In this ARC Talks, Dr. Kevin Alexander, a cardiac amyloidosis specialist from Stanford University, discusses the cardiac signs and symptoms to recognize, treatment and management options for each type of Amyloidosis and the future direction of research in the field.