Heart-related issues are a huge threat to African Americans, it can sometimes give people an array of unlikely symptoms. Having an irregular heartbeat along with carpel tunnel and fatigue might be a rare disease called transthyretin amyloid cardiomyopathy or ATTR-CM.
It took former NBA player and coach Don Chaney 10 years to get the right diagnosis for his condition. He told doctors how his mother and grandmother had heart disease and he was experiencing fatigue and palpitations.
“I started developing carpal tunnel syndrome about 10 years ago … and I had swollen knees and swollen ankles and pain,” Chaney said. “I didn’t mention this to my cardiologist because I just assumed that because I had a long, professional basketball career, it was related to that.”
In order to diagnose ATTR-CM, Chaney had to take genetic testing. There are two types of ATTR-CM: Wild-Type and hereditary. Wild-Type correlates to aging while hereditary is a mutation in your genes. Chaney was diagnosed with hereditary type.
With hereditary ATTR-CM, the transthyretin (TTR) protein takes an abnormal shape. This causes the protein to build up in different parts of the body, including in the nerves and digestive systems. The build-up to proteins causes symptoms like swelling of lower legs and feet, numbness, carpal tunnel, and irregular heartbeat.
Chaney’s cardiologist was familiar with the disease. ATTR-CM is underrepresented and underdiagnosed, hereditary ATTR-CM affects African Americans in a disproportionate rate.
“The problem with the disease is … it mimics regular heart conditions,” Chaney said. “[You] may have the mutation, but you may not have the symptoms … you can pass it on to your children.”
Through his process of diagnosis and treatment, Chaney’s wife, Jackie, was his key advocate. Her background in the medical field was a major asset, she takes a record of every ailment that Chaney has and reminds him to take his medication.
“She monitors my condition, she jots down everything that’s happening to me and makes sure that I report everything to the doctor,” Chaney said. “She makes sure that everything is jotted down and the doctors are informed on the changes in my body and what’s actually happening in my body so that I can get the correct treatment.”
Since he was diagnosed, Chaney has told his family members to get checked. Genetic testing is important to detecting ATTR-CM. Chaney’s advice to people who are experiencing symptoms is to communicate with their doctor in order to get diagnosed and get proper treatment early.
Chaney spent most of his years as an NBA player with the Boston Celtics. He is the only Celtics player that had both Bill Russell and Larry Bird as a teammate. During his career as a coach, he was at the helm of the L.A. Clippers. Chaney believes the current Clippers squad is talented.
“Kawhi Leonard is just unbelievable,” Chaney said. “Paul George, when he’s hot, can’t nobody stop him.”
For more information about ATTR-CM, visit https://www.yourheartsmessagewithdon.com.