heart talks
patient stories
Hear stories from real ATTR‑CM patients and caregivers. Patients discuss their "heart's message" and journey to diagnosis, what it's like living with ATTR‑CM, and advice for others who are starting their ATTR‑CM journey.
Choose topic
- Signs and symptoms
- Talking to your doctor
- Genetic testing
- Caregiver support
- ATTR‑CM education
Signs and symptoms
Recognize the signs and
symptoms
“If you have had these other symptoms, then you need to talk to your doctor about amyloidosis.”
– Walt, ATTR-CM Patient
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In memory of Walt, a passionate advocate (1948-2022).
The seemingly unrelated signs and symptoms of ATTR‑CM
“I suspect that every journey is unique. I have been fortunate in that I got an early diagnosis.”
– Dempsey, ATTR-CM Patient
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Connecting the symptoms
“I went to my primary care physician, and she couldn't figure out what was going on, and she sent me to a cardiologist.”
– Faye, Hereditary ATTR-CM Patient
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Identifying ATTR‑CM early
“Diagnosis took 11 years. If someone would have known to look, mine could have been diagnosed earlier.”
– Walt, ATTR-CM Patient
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In memory of Walt, a passionate advocate (1948-2022).
How caregivers can recognize symptoms and take action
“Because the symptoms are so varied, as a caregiver, you have to participate and take notes.”
– Jackie, Caregiver
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Talking to your doctor
Finding the
right cardiologist
“It's terribly important to work with somebody that understands cardiac amyloidosis.”
– Dempsey, ATTR-CM Patient
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Taking an active role at
doctors’ appointments
“When I went with Dempsey to the doctors’ appointments, I was a second set of ears and took notes.”
– Kathie, Caregiver
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Helping a loved one get the
right diagnosis
“Leading up to his diagnosis, I was always with him when he talked to his doctors, and we did our research together.”
– Jackie, Caregiver
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Being proactive to
find a diagnosis
“It’s very important to continue to look for a physician to help identify those symptoms that you have.”
– Kathie, Caregiver
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Genetic testing
Runs in the family
“Genetic testing is very important if you are diagnosed with ATTR-CM. You need to inform your family members if you have the hereditary form of the disease.”
– Randy, Hereditary ATTR-CM Patient
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Diagnosis and genetic testing
“Don had genetic testing done, and that’s how he found out that he had hereditary ATTR-CM.”
– Jackie, Caregiver
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Caregiver support
You are not alone
“My husband, Brad, is my caregiver. I couldn't walk this journey without him.”
– Faye, Hereditary ATTR-CM Patient
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Love doesn’t quit
“It's hard watching Faye go through the struggles that she has. It's not gonna change...how I love her.”
– Brad, Caregiver
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Managing ATTR-CM together
“I think the best way Jackie really helps me manage my ATTR-CM is just being there for me and being positive.”
– Don, Patient
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Importance of staying positive
“We decided that we would work as a team, and we would get through this together.”
– Jackie, Caregiver
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See something?
Say something.
“I have to speak up because I see it. I see the pain that he experiences.”
– Jackie, Caregiver
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How you can help a loved one
on their journey to diagnosis
“We always talk things out. We just helped each other get through conversations of what we learned and what our questions were.”
– Kathie, Caregiver
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ATTR‑CM education
Increasing ATTR‑CM awareness
“There's such a high incidence of misdiagnosis...healthcare providers, family members, the public in general should be aware of this disease.”
– Randy, Hereditary ATTR-CM Patient
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Community communication
“It is vital that information about ATTR-CM be shared within the African American community, especially.”
– Randy, Hereditary ATTR-CM Patient
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Voices for the Heart
Learn more about hereditary ATTR‑CM and Voices for the Heart community events.