Don Helps Spread the Word About ATTR-CM

Don Chaney helps spread the word about ATTR-CM.

As a two-time champion NBA player and head coach, I learned how important it is to keep moving forward, even when faced with long odds. That’s what I did when I was diagnosed with a rare form of heart failure called transthyretin amyloid cardiomyopathy, or ATTR-CM.

My symptoms sort of crept up on me. About 10 years ago, I began to get easily winded during my regular runs and workouts. My mother and grandmother had both died of heart disease, and I wondered if I might be facing the same issues. Later, a cardiologist confirmed my fears.

It never occurred to me to tell him about my other symptoms, which included swelling in my knees and joints and carpal tunnel syndrome in both hands. I just figured all those years on the court – and the many injuries I sustained – had taken a toll.

Had I mentioned those symptoms, my doctor might have put the pieces together and realized I had ATTR-CM. There are 2 sub-types of ATTR-CM, wild-type, which occurs as you age and the hereditary form of ATTR-CM (hATTR-CM), which is genetic. I learned I am living with the hereditary sub-type.

The condition causes misshapen transthyretin proteins or amyloid to accumulate in my organs, including my heart, which makes it more difficult for my heart to pump blood. While there’s no cure, the sooner you get diagnosed and start treatment, the better chance you have to manage the disease.

When I first learned I had ATTR-CM, I felt like my body had let me down. But then I realized my story could help others, starting with my own family. I told them all about the condition and urged them to get genetic testing and counseling. Several followed my advice, and as a result, one of my family members found out she also has the gene mutation, so she’s now closely watching for any symptoms associated with the disease.

I share my story with the hopes of raising awareness about ATTR-CM, especially in the African American community. I think of myself as a messenger, and I’m so glad I can help spread the word.