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
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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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
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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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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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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