Have a listen to this brief clip from Sean with thoughts on getting such a devastating diagnosis. Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights.
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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.
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.
Early and Accurate Diagnosis of Amyloidosis
In this video, Mackenzie Boedicker and Dr. Betsy Mencher (caregiver for her husband) share their experiences and discuss the importance of an early and accurate diagnosis of amyloidosis.
Closing the Medical Education Gap
Lack of awareness, a gap in medical education, is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives. The Amyloidosis Speakers Bureau (ASB) brings the patient voice to medical education, complementing traditional didactic and clinical studies. Together, this narrows the education gap and results in a more robust and durable education of medical trainees, thereby accelerating diagnosis and improving patient lives.
Please WATCH this powerful message from amyloidosis experts to medical educators.
Patient Insights: There are Zebras
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 collaborating with colleagues and to be aware that there may be a zebra in your future.
Patient Insights: Missed early symptoms
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 missed early symptoms in her disease progression.
