MARINETTE—Young Addison Lacy knows firsthand about a disease that most people—and likely some doctors—don’t even know exists.
Lacy, an 8th grade student at Marinette Middle School, addressed the Marinette Common Council Tuesday to spread the word of Amyloidosis Awareness Month in March.
“I’m volunteering for the Amyloidosis Foundation to raise awareness throughout March,” she said.
The 13-year-old calmly told the council how her father, Josh, was diagnosed with the disease about eight years ago.
“One of the reasons it is so deadly is that many people, including doctors, are not aware of it and the sooner it is diagnosed, the better it can be treated,” she said. “My dad was diagnosed with it when I was 5. Many doctors could not figure out what was wrong and we had never even heard of it and that almost killed him.”
She said if doctors, or her family, had known about Amyloidosis, her father could have received treatment sooner.
“Awareness is extremely important,” she emphasized.
Addison’s parents, Josh and Adrienne, the city’s assistant recreation director, were in the council chambers to watch their daughter’s presentation.
She described the disease as “cancer like” and said it occurs when there is a buildup of protein in bone marrow that may spread to organs leading to organ failure.
The disease was first described more than 200 years ago, according to the Amyloidosis Foundation. While the disease generally affects middle-aged people and older, it can be seen in individuals in their 30s—as was the case with Addison’s father.
“It is extremely deadly and does not have a lot in the way of treatment,” Lacy said. “… even reaching a few people can make a huge difference.”
People can find more information about the disease at the Amyloidosis Foundation Facebook page or at www.amyloidosis.org. The foundation is based in Clarkston, Michigan, and the phone number is 248-922-9610.