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Why Patients Join the ASB

The heart and soul of the Amyloidosis Speakers Bureau are our patient educators. They share their authentic journey of battling amyloidosis, from symptoms to diagnosis, treatment, and life today. Their stories provide an impactful education to medical students and residents, raising awareness of this disease. As a result, these future physicians will be better prepared to suspect amyloidosis, leading to earlier diagnosis, treatment and ultimately improving patient lives.

Patient Insights: Seeking a second opinion

Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights.

Have a listen to this brief clip from Mike sharing how it’s important for patients to self-advocate, particularly about their course of treatment. They are entitled to do research and if desired, seek a second medical opinion. How the physician reacts to the news can be telling.

Patient Insights: Impact on a Family

Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights.

Have a listen to this brief clip from Darlene with thoughts on how this disease has impacted her family.

Testing Carpal Tunnel for Amyloidosis: One Patient’s View

Linda, one of the ASB’s patient educators, shares highlights from her experience with carpal tunnel syndrome and a recent interaction with one of her hand surgeons.

Key take-away … biopsy the tissue from CTR surgery, as it may offer advance awareness of the disease.

 

Unraveling the Lineage: The Genetic Basis of Familial ATTR Cardiomyopathy

Dr. Witteles, a cardiologist and co-director of the Stanford Amyloid Center, discusses genetic testing, sequencing the TTR gene, and clarifies the confusing mutation nomenclature. He details the most common of the more than 145 known hereditary mutations, the prevalence of cardiomyopathy versus neuropathy, and references studies around diagnostic factors.

Role of Interdisciplinary Care Teams for Amyloidosis Patients

Dr. Melissa Lyle from the Mayo Clinic offers insights into the importance of having an interdisciplinary care team across sub-specialties for amyloidosis patients. Diagnosing and treating complex diseases, such as amyloidosis, elevates the importance of alliances within the patient care team.

Neurological Complications of ATTR Amyloidosis

Patients with ATTR amyloidosis are commonly faced with neurological complications. In this presentation, Dr. Chafic Karam from the University of Pennsylvania goes through four areas: an overview of the neurological systems, how amyloid damages the nerves, neurological signs of ATTR amyloidosis, and how to detect amyloid and diagnose ATTR amyloid neuropathy.

 

Musculoskeletal Pathology as an Early Warning Sign of Systemic Amyloidosis

Dr. Shari Liberman, a hand and upper extremities surgeon from Houston Methodist Orthopedics & Sports Medicine, discussed six orthopedic manifestations and their pathology as it relates to systemic amyloidosis. Published studies, coupled with her experience, has led to a belief that these manifestations can offer important evidence of amyloidosis. She concludes with thoughts regarding an orthopedic differential and biopsy considerations for each of these manifestations.

Ensuring Adequate Racial and Ethnic Representation in Amyloidosis Clinical Trials

Dr. Frederick Ruberg, cardiologist at the Boston University Amyloidosis Center, discusses the diversity of racial and ethnic occurrences of amyloidosis, and why this should parallel patient representation in clinical trials. He illustrates the persistent disparities observed by race and ethnicity and how un-recognized ATTR amyloidosis, for example, could be contributing to such differences. Adding more evidence, he shares how published clinical trials of ATTR-CM agents are insufficiently diverse. He summarizes possible solutions for improving future clinical trial participation.

Diagnosing AL and ATTR Cardiac Amyloidosis

Dr. Justin Grodin, a cardiologist and co-director of the UT Southwestern Multidisciplinary Amyloidosis Program, goes through the diagnostic process for AL and ATTR cardiac amyloidosis. He discusses key differences between AL and ATTR, and how typing of amyloidosis is paramount to consider in order to subsequently develop a treatment plan. He goes through a diagnostic algorithm to help clinicians arrive at an accurate diagnosis. Finally, he stresses the importance of genetic testing and counseling for ATTR to differentiate between wild-type and hereditary, as well as identifying the specific genetic variant.

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