'Please help me, something's wrong': Ohio woman dismissed by doctors learns she had a 1-in-a-million life-threatening disease – We Got This Covered
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‘Please help me, something’s wrong’: Ohio woman dismissed by doctors learns she had a 1-in-a-million life-threatening disease

An extremely rare disease and a treatment that came just in time.

Michelle Williams is an Ohio mother who, at the height of the Covid-19 pandemic, lived with her husband and two children in a farmhouse they’d just purchased. 

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For years, Michelle struggled to get a clear answer about what was making her sick. According to the report by CBS News, she first noticed her elevated blood pressure during the pandemic, then watched other symptoms slowly appear and accumulate. They included swelling that pushed her into wearing larger shoes, fatigue that didn’t seem to go away, and frequent nighttime trips to the bathroom.

It’s a set that could make anyone irritable, especially if it is repeatedly dismissed by health professionals. In fact, Michelle visited a physician in June 2023, and they told her to lower her blood pressure and come back in six months. “I got to my car, and I was just depressed. Something was wrong. I didn’t feel taken seriously.”

The following month, Michelle referred herself to the Cleveland Clinic, following a letter that included the phrase “Please help me, something’s wrong.” It still took several weeks to be admitted, and after two days of testing, a nephrologist flagged abnormalities in her blood work and ordered biopsies of her bone marrow and kidney. 

The results pointed to multiple myeloma, a blood cancer that can damage the kidneys, and she spent close to six months undergoing chemotherapy and immunotherapy. And yet, her symptoms did not improve.

That lack of response prompted her care team to keep looking. “It really got me thinking: If we are treating the underlying cause and she’s not improving, then what else are we looking at and what else are we missing?” Dr. Jagmeet Dhingra, a Cleveland Clinic nephrologist, told CBS News.

The culprit was an extremely rare kidney disease

A second round of biopsies showed her bone marrow was healthy, but that immune deposits were collecting in her kidneys, leading Dhingra to diagnose IC-MPGN, a kidney disorder tied to the immune system.

The condition is among the rarest kidney diseases, affecting roughly one to four people per million, according to Dr. Carla Nester of the University of Iowa. The National Kidney Foundation notes that IC-MPGN can progress to kidney failure requiring dialysis or a transplant, though the pace varies between patients.

Before 2025, per what Nester said, doctors relied on immunosuppressants and chemotherapy to ease some symptoms without addressing the underlying cause. Now, Michelle’s outlook has shifted with a drug called pegcetacoplan, which was at the time still in clinical trials.

She enrolled in February 2025 and reported improvement almost immediately. “Right away, we saw change. I was back to my feisty self. I felt like I had freedom back,” she told CBS News.

More than a year into treatment, Williams’ swelling has resolved and she takes far less medication


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Author
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Jonathan Wright
Jonathan is a religious consumer of movies, TV shows, video games, and speculative fiction. And when he isn't doing that, he likes to write about them. He can get particularly worked up when talking about 'The Lord of the Rings' or 'A Song of Ice and Fire' or any work of high fantasy, come to think of it.