Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Rayna. She talks about how important she felt it was for her survival that her physicians communicated.
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Patient Insights: West African Descent – BE AWARE!
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Greg with his call out to those of West African descent — BE AWARE there is a high prevalence believed to be carriers of hereditary amyloidosis.
For those that would like a more clinical explanation of this genetical variant, we invite you to view this video by Dr. Kevin Alexander, advanced heart failure and transplant cardiologist at the Stanford Amyloid Center. In it he discusses transthyretin cardiac amyloidosis (ATTR-CM) and how today this is a “common rare disease,” more prevalent than previously appreciated. He summarizes findings from a study to understand diagnosis across the U.S. and how ATTR-CM disproportionately affects black individuals. This statistic is driven by the belief that 3-4% of African descendants carry the V122I TTR variant – translating to over 1 million carriers. Kevin offers a screening algorithm for who to screen for ATTR-CM, and examines sub-groups of African Americans that are important not to overlook.
Patient Insights: Stay Curious
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Ozzie with his words of recommendation to all physicians — stay curious — and you will save lives.
Patient Insights: Not Every Symptom is Amyloidosis
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Dan with his reminder to PCPs — not every symptom is due to amyloidosis!
Humanizing Medical Education: Beyond Bullet Points
The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. By humanizing medical didactic education, patient insights can offer an impactful and durable education that complements traditional didactics, developing what we believe will be better and more empathetic future medical practitioners.
Patient Insights: Be a medical detective
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Joe with thoughts on physicians being curious and persistent to find answers.
Patient Insights: I have to advocate for myself
With a rare disease, it is difficult to expect the healthcare community to be fully knowledgeable. Thus being a self-advocate is critically important. Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Dan.
Patient Insights: Discussing a hereditary disease with relatives
With a hereditary disease, talking with relatives can be challenging. Hear Greg share ways that he has advanced discussions. Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Greg.
Patient Insights: Diagnosis was a huge relief
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.
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.
