In 2019, former NBA player and coach Don Chaney was diagnosed with the hereditary form of a rare, life-threatening condition called transthyretin amyloid cardiomyopathy, or ATTR-CM.
If Don's story sounds familiar, it may be time to talk to your doctor about ATTR-CM.
FACING AN UNEXPECTED OPPONENT
Watch Don share his personal journey with hereditary ATTR-CM.
Scroll down to learn more about Don’s story
A COMMON BEGINNING
HEART DISEASE RAN IN MY FAMILY
A few years ago, I started seeing a cardiologist for some heart-related symptoms, like fatigue, palpitations, and shortness of breath. I was taking medicine for my palpitations as prescribed, but it was only making me feel worse. And because my mom and grandmother both passed away from heart disease, I was worried that I may be facing the same issues as them.
I underwent several tests and procedures to figure out what was going on, which is how I found out I had heart failure.
It may surprise you to learn that African Americans are more likely than other races or ethnicities to have heart disease, including heart failure.
MISSED CONNECTIONS
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.
ATTR-CM is an underdiagnosed cause of heart failure in African Americans.
ATTR-CM is an underdiagnosed cause of heart failure in African Americans.
FINALLY, A DIAGNOSIS
I WAS LIVING WITH ATTR-CM
Like many people, and even some doctors, I was unfamiliar with ATTR-CM and didn’t know the signs or symptoms. After speaking with my cardiologist, I learned that some symptoms of ATTR-CM are similar to those of more common causes of heart failure, while others are not typically associated with the heart at all. In my case, and for many others, this lack of awareness about ATTR-CM can lead to a delayed or incorrect diagnosis. And because ATTR-CM can get worse over time, early diagnosis is key to establishing a timely treatment plan.
Heart-related ATTR-CM symptoms:
- Irregular heartbeat
- Fatigue
- Shortness of breath
- Swelling in lower legs and feet
Other ATTR-CM signs and symptoms:
- Bilateral carpal tunnel syndrome
- Pain or numbness in lower back or legs
- Eye disorders, such as glaucoma
THERE ARE 2 TYPES OF ATTR-CM
THERE ARE 2 TYPES OF ATTR-CM
I HAVE THE HEREDITARY TYPE
After I was diagnosed with ATTR-CM, my doctor strongly recommended genetic testing and counseling to find out which type of the disease I had.
Once it was confirmed that I had the hereditary form of ATTR-CM, I spoke with my 3 adult children, sisters, and brothers about getting tested to see whether or not they also have the gene mutation that causes the disease.
Hereditary ATTR-CM is passed down from a relative and is caused by a change (or “mutation”) in one of your genes. In the United States, the most common mutation that causes hereditary ATTR-CM (V122I) is found almost exclusively in African Americans.
MOVING FORWARD
I’M FOLLOWING A TREATMENT PLAN THAT WORKS FOR ME
Today, I work closely with my doctor to manage my hereditary ATTR-CM. I focus on my health by trying to stay active and taking my medication as prescribed. My wife, Jackie, is so supportive as well—taking on the role of my caregiver and advocate.
With the help of my amazing healthcare team, I’m able to manage my ATTR-CM. And I look forward to spending my retirement years doing the things I enjoy, like coaching my grandkids' basketball teams, surrounded by the people I love.
DOES DON’S STORY SOUND FAMILIAR?
DOES DON’S STORY SOUND FAMILIAR?
PARTNER WITH YOUR DOCTOR TO FIND ANSWERS
If you are African American, over 50 years old, have a family history of heart failure, and are experiencing unresolved symptoms like Don’s, you could be at risk for hereditary ATTR-CM.
Use this simple online tool to create a custom discussion guide to help you talk with your doctor about ATTR-CM.
