BOYNTON BEACH, Fla. – In the last five years, Dennis Ennis has lost five of his 12 siblings to congestive heart failure, but he didn’t consider his own risk, even when he started having shortness of breath.
“I was wondering what was wrong but it didn’t dawn on me that I should think of that,” Ennis said.
A visit to a cardiologist revealed he had indeed developed congestive heart failure, just like his siblings.
“My heart was about three times the normal size,” he said.
Dr. Vivian Navas, with Cleveland Clinic Florida, said in Ennis’ case and many others, the root cause is a condition called cardiac amyloidosis.
“Amyloid is the deposit of this abnormal protein in the muscle of the heart, and it makes it thick, and it makes it stiff and, eventually, it makes it not work well,” Navas said.
Amyloid disease occurs more frequently in men but Ennis’ particular type tends to affect people of Afro-Caribbean descent more frequently.
Until recently, Navas said treatment options have been limited, but a newer medication is showing promise.
“The latest and greatest medication is called Tafamidis. It’s a pill that you take. It doesn’t reverse the disease, but it kind of stops the progression of the amyloid,” she said.
As the amyloid deposits accumulated on his heart and his kidneys, Ennis’ only option was to undergo both a heart and kidney transplant.
“My message and my mission is to make people aware that if you’re having signs of heart failure, you should get tested for amyloidosis. It’s not one of the regular tests that’s done, but it should be considered as one of the alternatives,” he said.
There are a variety of tests that can be done to diagnose cardiac amyloidosis, and many patients can now expect to survive with a good quality of life for several years.