By Kathy Feist
Mike Lane is trying to get the word out to the Black community: If you are over the age of 60, feeling fatigue and tingling in your extremities, have been diagnosed with heart disease but not improving, you may have a deadly genetic disorder called amyloidosis.
While the disease can affect individuals of any ethnic background, cardiac amyloidosis was found to be higher among Blacks (4.6%) than whites (0.4%). Sadly, the disease is rarely diagnosed.
“It’s not on the doctors’ radars,” says Lane. “The average person sees four doctors before getting properly diagnosed.”
Black patients must become their own best advocate, says Lane. Which is why he is involved in a campaign to spread awareness.
“Awareness is the pathway,” says Lane, who, thanks to a new cure, is recovering from the debilitating disease.
Symptoms
Amyloidosis affects all populations, not just African American.
“There is an Irish variant, Portugal variant, different variants, but all lead to the same amyloidosis.” says Lane.
Those of West African descent carry a genetic mutation that makes them more susceptible to cardiac amyloidosis (ATTR). This form mimics congestive heart failure.
Symptoms may include heart rhythm problems, neuropathy, fatigue, swelling in the legs, carpal tunnel syndrome. If someone is not improving from treatment for heart disease, they should be tested for amyloidosis.
Amyloidosis occurs when protein from the liver is deposited and accumulated on an organ or tissue, changing its structure and functionality.
The disease can be detected with a nuclear imaging scan. But it can also be discovered with genetic testing kits often found at drug stores. The responsible gene for the disorder is a single mutation (V122i) found among those with West African ancestors.