Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Sean. He talks about how his PCP and those around him suggested his symptoms were all in his head, and that an appropriate next step would be to see a therapist.
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Patient Insights: My Doctor’s Persistence Kept Me Going
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 her doctor’s persistence and unwillingness to give up gave her great strength to keep going.
Patient Insights: Think Beyond the Silos
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Robert where he talks about the need for broader coordination across specialists and how this is critical for patients with multi-systemic disease.
Patient Insights: Improving Communication Among Care Team
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Liz as she talks about the need to coordinate communication between her specialist providers – it’s often not easy.
Gesna: How Hereditary Cardiac Amyloidosis Affects Her Life
View this short video from ASB patient educator Gesna about her journey with hereditary cardiac amyloidosis. She shares the devastation of many family members lost to the disease, symptoms she now knows were “red flags” that were missed along the way to diagnosis, her life today and positive outlook for the future.
Finally, she offers a powerful message to the African American community where the need to raise awareness is an urgent call to action.
Many thanks to AMCP for producing this video. AMCP, the Academy of Managed Care Pharmacy, is the professional association leading the way to help patients get the medications they need at a cost they can afford.
Patient Insights: “Athlete’s Heart”
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. In this clip, Dan shares how his provider commented on his heart’s thickened walls – you’ve got athlete’s heart, and all’s good. A shocking missed opportunity to suspect cardiac amyloidosis.
Patient Insights: Interpreting a Patient’s Issues
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Bill. He discusses the challenges physicians may face in interpreting issues their patients face – it may not always be easy.
Patient Insights: Mentally Fighting to Survive
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 the mental side of her fighting an incurable disease and what she focused on to survive.
Patient Insights: My survival depends on my physicians communicating
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.
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.
