ROCK ISLAND, Ill. — Today's health care landscape remains a challenge and one rare inflammatory disease causing a ripple effect is sarcoidosis.
According to the American Lung Association, the United States sees roughly 27,000 new cases every year. Locally, 1,083 patients have been diagnosed with sarcoidosis in the UnityPoint Health Quad Cities region in the last three years, as of Oct. 5. According to Genesis Health System, a total of 548 patients were diagnosed with a form of sarcoidosis from 2010 to Sept. 25, 2023 throughout its medical centers in Davenport, Silvis, DeWitt and Aledo.
Carol Miller, 65, of Rock Island is also one person suffering from the disease. The illness causes her to struggle with breathing, one of the main symptoms, among other aches and pain.
"For me personally, it is what it is," she said. "I live with it. I’ve met so many people that have the disease, that know somebody who has it and knows somebody who has already died from complications of this disease.”
The late legendary comedian Bernie Mac, named Bernard McCullough, is included after he died in 2008 at 50 years old.
“Sarcoidosis had took a toll on him," Rhonda McCullough-Gilmore, Bernie's wife and president and CEO of the Bernie Mac Foundation said. “It is more common than you think.”
She said it led to lung problems further into his career despite fighting since his 20s. Rhonda said Bernie was first diagnosed with cancer of the lungs due to dated technology.
"No matter how bad he was stricken with it, he always just kept positive," Rhonda said. "And he used to say, 'sarcoidosis don't have me, I've got sarcoidosis.' For many, many years, he went on to just live life and never had any issues with it."
Carol has faced the problem throughout her life span. There were hives on her arms during our interview. She said it took roughly 20 years to get an accurate diagnosis as doctors often classified the issue as relating to pneumonia.
"Doctors kept telling me allergies, allergies," Carol said. "Hair falling out. Different things like that for years. It's specialist after specialist after specialist."
Carol's Dr. Udaya Shreesha at UnityPoint Health said there has been a gap in understanding throughout the medical field.
"Because it's a rare disease, the diagnosis of it becomes challenging at times," Shreesha said. "This issue is common with rare diseases because we don't see it very often."
Shreesha said there are two forms of sarcoidosis - acute and chronic form. Acute is a skin reaction in the leg and chronic develops large lymph nodes in the chess.
"Are the symptoms persistent, are the symptoms getting worse?" Shreesha said.
Shreesha said the disease is more common in African Americans and women. Caucasians with Scandinavian-origin also have higher tendency.
"I have Gerd, I have heart disease, lung disease, COPD, scarring of the lungs due to the sarcoidosis," Carol said. "Some people feel so alone. I just want to bring awareness, so people have a better understanding and a little bit more empathy."
Carol is turning her experiences into much more by launching a support group in the Quad Cities. The meetings are on the third Thursday of each month at 6:30 p.m. at St. Anthony's Nursing and Rehab Center in Rock Island.
"This is for family, friends, caretakers, anybody," Carol said. "It's been so many people in my sarcoidosis community, one minute you're here and the next minute you're gone."
The roundtable setting comes after Carol established her first support group in Indiana years ago before moving to the Quad Cities.
"Don't take your health lightly," Carol said. "I just take it one day at a time."
Doctors said sarcoidosis is not hereditary, but it also hit home for Carol once she learned some family members were impacted. Her dad's youngest brother, dad's first cousin, and mom's first cousin died from complications of the disease. They ranged in age of their 40s to 80s.
Sarcoidosis has no cure, but there is treatment usually prescribed, such as prednisone. The Bernie Mac Foundation has also partnered with the University of Illinois to find a cure and offer free care through a research center named Bernie Mac STAR Clinic. Carol also goes through therapy with exercising following her doctor's recommendation.
Carol has received three proclamations for her work throughout communities, including in Indiana and Rock Island.
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