Len, living with ATTR

Len is living with transthyretin amyloidosis (ATTR), a rare, often underdiagnosed, and life-threatening disease that can devastate the heart and nervous system. 

Len was in the middle of a step aerobics class, about ten years ago, when he began experiencing heart palpitations and dizziness. The symptoms were odd. He and his wife Karen exercised together four or five times per week and he had never had any trouble keeping up with their vigorous routine.

He went to see his doctor, who discovered his heartbeat was irregular. He was promptly sent to a cardiologist. 

“I had an enlarged heart and thickened walls, so I was referred to a hematologist at Mayo Clinic,” Len says. “The first thing he asked me was; ‘is there any family history of amyloidosis?’”

Len’s mother had amyloidosis and Len was found to have a hereditary form of amyloidosis and the most common genetic variant of ATTR cardiomyopathy, Val122Ile or V122I. Approximately 4% of African Americans carry the V122I variant. 

Due to the extensive heart damage caused by the disease, Len’s name was added to the heart transplant list. He had a successful transplant and has become an advocate for transplant patients and people living with transthyretin amyloidosis.