September is Pulmonary Fibrosis Awareness Month; what is it?
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September is Pulmonary Fibrosis Awareness Month. The condition causes lung scarring over time, resulting in horrible symptoms and low oxygen levels. It blocks the movement of oxygen from the lungs to the bloodstream.
Not too many people are familiar with the disease.
There’s no cure, or specific cause, for this.
Cheri Riley of Greece was diagnosed in 2017. At the time, she had no idea what it was, and didn’t even have symptoms.
Now, she’s educating the public about it, with hopes to help others and maybe even save lives.
She enrolled in a clinical trial in January. It’s her only hope for managing the disease, since the other two medications used to treat it don’t work effectively on her body.
Every day, for four times a day, Cheri takes 12 breaths from a blue, ultrasonic nebulizer.
“My blue bong. It’s easier to say ‘I’m going to go hit my bong’ than ‘I have to do a treatment,’” she said, laughing.
Symptoms include dry cough, breathlessness and fatigue. But Cheri actually didn’t develop those until later on.
“The disease has progressed to the point where I need to wear oxygen anytime I’m talking a lot, which I do a lot!” she said. “Or, if I’m out walking around, that exertion is too much. My lungs have scarred too much.”
She’s never been a smoker, and said no other health conditions contributed to this. It just crept up on her.
All it took was one doctor to listen closely during a routine check-up.
“He just said, ‘let me take a listen to your lungs.’ And he kept going back to one spot, and he instantly changed his demeanor.”
Now she’s raising awareness, because detection is hard. She said many people live with the disease and don’t know it. Sometimes, doctors mistake it for other things.
This month, Cheri is encouraging others to raise awareness by wearing blue.
Buildings in Rochester were lit up blue over the weekend.
“And I knew that Rochester would come through,” she said.
In the meantime, she’s leaning into her support system, and enjoying her hobby of painting while retired.
She says she’ll continue to speak out, until her last breath.
Cheri also spoke highly of her doctors at the University of Rochester Medical Center. The U of R said it is home to Upstate New York’s only Pulmonary Fibrosis Foundation Care Center Network. A spokesperson said it’s a prestigious designation among the top institutions across the country.
Cheri also works as an ambassador for the Pulmonary Fibrosis Foundation.
Two major support groups in Rochester support over 80 people.
To find support, visit here.