Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Dr. Charles Williams. He talks about how since his diagnosis the awareness and treatments about amyloidosis are definitely improving, and that’s fantastic.
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Patient Insights: I Have Multiple Orthopedic Manifestations
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from John. He talks about how his years of multiple orthopedic manifestations might have been “red flags” to diagnose his disease earlier.
Patient Insights: A Diagnosis of Congestive Heart Failure Wasn’t Enough
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Dr. Charles Williams. He talks about how his diagnosis of congestive heart failure didn’t address the root cause, and the importance for providers to keep digging until they find the ultimate cause of the CHF.
Patient Insights: Getting Older May Not Be the Reason
Our patient speakers at the Amyloidosis Speakers Bureau are powerful educators and offer compelling insights. Have a listen to this brief clip from Joan. She talks about how her doctor attributed her symptoms to her age, even though she was convinced something was wrong.
Patient Insights: It’s All In Your Head
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.
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.
