SHARING KNOWLEDGE ABOUT HEREDITARY ATTR-CM
Voices for the heart, from the heart.

Do you or does someone you know live with heart failure? Hereditary ATTR-CM (transthyretin amyloid cardiomyopathy) affects Black, African American, and Afro-Caribbean communities more than any other. Voices for the Heart is here for your stories about heart health. Learn how you can host a Voices for the Heart event.

HEREDITARY ATTR-CM AFFECTS BLACK, AFRICAN AMERICAN AND AFRO-CARIBBEAN COMMUNITIES MORE THAN ANY OTHER

Randy, hereditary ATTR-CM patient

Hereditary ATTR-CM is a condition associated with heart failure. It is caused by a change (or a “mutation”) in one of your genes, which can be passed down from a relative. In the US, the most common mutation that can cause ATTR-CM is V122i, and it affects Black, African American and Afro-Caribbean people almost exclusively. That’s why Voices for the Heart is dedicated to elevating the experiences and stories of people in your community who are living with ATTR-CM or have a loved one who is experiencing the condition.

If you are of Black, African American or Afro-Caribbean descent, are over 50 years old, have a family history of heart failure, and you are experiencing unresolved symptoms, you may be at risk for hereditary ATTR-CM.

HEAR RANDY’S STORY

OUR GOAL

Woman holding papers and speaking in front of an audience

Partnering with the community’s leaders to help raise awareness.

What happens at a local Voices for the Heart event? Local doctors, leaders, clergy people, and others will come together to host an event that aims to raise awareness about hereditary ATTR-CM among the community it affects. At an event, you may hear stories from those living with ATTR-CM, from local doctors who treat it, from local pastors who have counseled families dealing with health issues, or other people you’ll recognize from your neighborhood.

REGISTER FOR AN EVENT

Former NBA player and coach, Don Chaney, on his ATTR-CM experience

“I had joint pain and carpal tunnel syndrome, but never imagined they were related to my heart…”

“My cardiologist ran some tests, but the cause of my heart failure was still unclear. For years, I had experienced carpal tunnel syndrome, knee pain, and swelling in my lower legs and feet, but I simply chalked these up to my years on the court. I didn’t think to mention them as part of my medical history when I started having heart problems, but I wish I had. It turns out, some were early signs and symptoms of this rare heart condition called ATTR-CM.”

UNDERSTAND THE SIGNS AND SYMPTOMS

Do you know that some seemingly unrelated and unresolved signs and symptoms could be caused by ATTR-CM? Your body may be sending you a message.

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FATIGUE

(excessive tiredness)

"I'm tired all of the time"

TENDON RUPTURE

(eg, biceps, Achilles tendon)

“There is a painful lump in my upper arm.”

STOMACH ISSUES

(eg, diarrhea, constipation, nausea, or feeling full quickly)

“It seems like my stomach is more sensitive lately.”

SHOULDER, HIP, AND/OR KNEE PAIN

“It’s been years since I had my hip replaced.”

SWELLING IN LOWER LEGS

(known as peripheral edema)

“My lower legs and feet look swollen and puffy all the time these days.”

“I have a past medical history of glaucoma.”

EYE DISORDERS

(eg, glaucoma)

“Sometimes I feel like I can't catch my breath.”

SHORTNESS OF BREATH

“My doctor says I have an abnormal heartbeat.”

IRREGULAR HEARTBEAT

(known as cardiac arrhythmia)

“I’ve had carpal tunnel syndrome in both wrists for years now.”

BILATERAL CARPAL TUNNEL SYNDROME

(numbness, tingling, or pain in your fingers)

“My doctor told me my back pain is caused by something called lumbar spinal stenosis.”

PAIN OR NUMBNESS IN LOWER BACK OR LEGS DUE TO NARROWING OF LOWER SPINE

(known as lumbar spinal stenosis)

“It feels like my feet are always falling asleep.”

Decreased sensation or strange tingling or pain in toes or feet

(known as peripheral neuropathy)

CLINICAL TESTS TO LOOK FOR SIGNS THAT MAY SUGGEST ATTR-CM

INITIAL TESTS

Your doctor may first order the following tests to assess how your heart is working and look for signs of ATTR-CM. These tests may include:

Electrocardiogram (ECG)

Reads electrical signals from your heart
Can reveal conditions like irregular heartbeat (ie, atrial fibrillation), among other findings, that may be related to ATTR-CM

Echocardiogram (ECHO)

Uses sound waves to create images of your heart
Findings help determine the speed and direction of blood flow in the heart
Findings associated with ATTR-CM include, but are not limited to, heart failure with preserved ejection fraction (HFpEF), which relates to the amount of blood that passes through the heart with each beat

Cardiac magnetic resonance imaging (Cardiac MRI)

Uses radio waves, magnets, and a computer to create images of your heart to look for abnormalities

While none of these tests are typically used to confirm an ATTR-CM diagnosis, they can help your doctor learn more about your heart and determine the need for additional diagnostic testing.

DOWNLOADABLE RESOURCES

For more information about hereditary ATTR-CM and how to talk to your doctor, download this digital fact sheet

To learn more about the impact of cardiac amyloidosis, download this patient survey.

Learn more about hereditary ATTR-CM and how this disease has affected former NBA player and coach, Don Chaney. Download Don's brochure

EVENTS

Upcoming (2)

Detroit

3/28

Virtual Event Via Zoom

Free

Dallas

3/30

Virtual Event Via Zoom

Free

You will be directed to our Zoom registration page

This site is intended only for U.S. residents. The information provided is for educational purposes only and is not intended to replace discussions with a healthcare provider.

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SHARING KNOWLEDGE ABOUT HEREDITARY ATTR-CM Voices for the heart, from the heart.