AMY’S QUEST
One woman working to connect the dots between chronic pain and PFAS
Last fall Mandi Saltsman mustered the courage to share with her friends on Facebook what it’s like to live with the chronic pain caused by psoriatic arthritis and among those who responded immediately was Amanda “Amy” Biniecki.
“I told her, “I understand what you’re saying because I also have it,” said Biniecki, noting Saltsman was not talking about achy joints when it rains. “It is crippling disfigurement, constant chronic pain and fatal comorbidities. It is in fact a life of hell and a death sentence.”
Biniecki was not the only one to respond to the Facebook post.
A third friend who chimed in on the post explained why the post got her attention.
“Many people that suffer from chronic pain really do not discuss it. People cannot see your pain or feel the pain you experience on a daily basis. People only see it when you
are at your worst, having difficulty walking, writing or doing normal daily activities, or they see the pain as a complaint, which is why people that suffer with chronic conditions have a tendency to keep things to themselves,” said Jennifer Diamanti, who once lived down the street from Biniecki and Salstman. “I commented on Mandi’s post because I did not want her to feel like she was alone in how she was feeling.”
Biniecki now lives in Clare, Salstman is in Arizona and Diamanti resides in California but they all grew up in Macomb Township.
“We all lived on the same street,” said Biniecki, who can remember complaining to her mother about joint pain as a little girl. “It’s weird to have two friends that have the same illness but three? It set off a red flag.”
Especially since it’s not a common illness but an autoimmune disease. People with psoriasis develop inflammation and stiffness in joints, at the ends of the tendons, and even the spine, causing chronic pain that can range from mild to severe.
It’s these accumulative similarities that made Biniecki wonder who else had it.
“We began to reach out to others we knew that lived amongst us and they too shared the same, similar or overlapping autoimmune diseases,” Bineicki said.
What was three became 33.
And it didn’t end with them.
Friends reached out to friends and the list kept by Bineicki grew to nearly 50 people and counting, including her father.
A suffering cluster
Fifty might seem like a small amount considering how many people in the United States and around the world experience psoriasis and psoriatic arthritis but these cases are not spread out.
These are people who lived within a few blocks of each other and it’s their messages and phone calls to Biniecki that has led her on a quest to find out if their discovery was more than a coincidence.