CHESTERFIELD COUNTY, Va. (WRIC) — Chesterfield resident Ronald Robertson knew something was wrong when he suddenly struggled to mow the lawn.
“I had been having issues shortness of breath,” said Robertson.
Robertson told 8News even climbing up the stairs became hard. “I was getting weaker and weaker,” he explained. Robertson went from doctor to doctor but no one could figure it out.
“They kept misdiagnosing it. One of them said I had COPD and so forth,” says Robertson.
It wasn’t until he collapsed and ended up connecting with Dr. Keyur Shah at VCU Health’s Pauley Heart Center until he learned some answers.
“They did a biopsy and they got it right and he saved my life,” Robertson said.
Dr. Shah confirmed Robertson had transthyretin amyloid cardiomyopathy or ATTR-CM. It is a rare disease where an abnormal protein builds up in your organs.
“These proteins deposit in the heart and cause the heart walls to become very thick. The heart becomes still,” explained Dr. Shah. The doctor said it can affect many Black Americans. “There is a mutation that came over from West Africa during the slave trade,” Shah told 8News.
In fact, one in 20 Black Americans is a carrier of this gene mutation. ATTR-CM can lead to heart failure and even death and it’s often misdiagnosed. Yet, Shah and his team are committed to raising awareness and finding an affordable treatment.
“It’s a very promising time,” he says. They’re currently enrolling patients in an international clinical trial at VCU. “That’s looking at a new medication called AG10 which is a stabilizer. This is one big step in having additional therapies on the market,” Shah said.
Tafamidis was the first FDA-approved drug to slow the progression of the heart disease. Yet, it is often unaffordable for many.
Robertson, who ended up needing a heart transplant, encourages others to get screened and see if they’re a candidate for the trial.
“Definitely get it checked out, could be your own life in your own hands,” he said.
Shah says anyone suspected of having TTR amyloidosis or heart issues should consider getting screened for the trial. He also told 8News early symptoms can be carpel tunnel syndrome, neuropathy and issues with spine compressing nerves.
You can find more information about the ATTR-CM or TTR amyloidosis and the VCU Health multidisciplinary team, visit vcuhealth.org/pauley-heart-center/our-expertise