A mom "didn't feel taken seriously" even as her symptoms worsened. Then tests found a rare disease.
HealthWatch
A mom "didn't feel taken seriously" even as her symptoms worsened. Then tests found a rare disease.
By Kerry Breen News Editor Kerry Breen is a news editor at CBSNews.com. A graduate of New York University's Arthur L. Carter School of Journalism, she previously worked at NBC News' TODAY Digital. She covers current events, breaking news and issues including substance use. Read Full Bio Kerry BreenJune 27, 2026 / 8:00 AM EDT / CBS News
Add CBS News on GoogleWhen Michelle Williams started experiencing high blood pressure, she didn't pay it much attention.
She had two small kids, the COVID-19 pandemic was raging, and she and her husband were in the middle of renovating a farmhouse they had recently purchased. It made sense stress would spike her blood pressure. Her doctor recommended some minor lifestyle changes, but didn't seem alarmed.
Other symptoms escalated slowly. Williams' feet became so swollen she had to buy larger shoes. She was fatigued, but more and more frequent bathroom visits kept her from sleeping. Her blood pressure kept rising. Her ankles started swelling, then her legs. Finally, her doctor referred her to a nephrologist, or kidney specialist.
That visit, in June 2023, didn't go well, Williams said. The physician assistant she saw did not show interest in the medical records she had printed out and brought, she said. The PA advised her to work to lower her blood pressure, but showed no interest in understanding why it was so high, Williams said. She was told to return in six months.
"I got to my car, and I was just depressed. Something was wrong. I didn't feel taken seriously," Williams said. "I didn't really feel like I had six months to wait."
"Please help me"
In July 2023, Williams referred herself to the Cleveland Clinic, where her father-in-law had once undergone a kidney transplant. She sent over her medical documentation, along with a "kind of impassioned letter about 'Please help me, something's wrong.'" Several weeks later, she was scheduled for two full days of appointments.
After a barrage of exams, Williams and her husband made the two-hour drive home. As they pulled into their driveway, her phone rang. The nephrologist she had seen was alarmed by her blood work, and wanted to biopsy her bone marrow and kidney.
"That was kind of scary, right?" Williams said. "So we gathered up a few things and turned around and went back."
Williams had both biopsies done over the next 24 hours. She also answered hundreds of questions meant to help doctors eliminate possible diagnoses. After recovering from the biopsies, she returned home.
Tests showed abnormalities in her urine and bone marrow, leading to a diagnosis of multiple myeloma, a form of blood cancer than can cause kidney problems. For nearly six months, she underwent chemotherapy and immunotherapy. Still, Williams' symptoms persisted.
"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?" said Dr. Jagmeet Dhingra, a nephrologist at the Cleveland Clinic. "It didn't sit right that she wasn't showing the response we wanted to see. So we kept looking."
What is IC‑MPGN?
Another round of biopsies showed Williams' bone marrow was healthy, but complex immune deposits were building up in her kidneys. After ruling out all other possibilities, Dhingra finally diagnosed Williams with IC‑MPGN, a kidney disease related to the immune system.
The disease is "one of the rarest" kidney conditions, said Dr. Carla Nester, a nephrologist, researcher and professor at the University of Iowa. Nester, who was not involved in Williams' care, estimated that only about one to four people per million are diagnosed with IC-MPGN.
In most cases, IC-MPGN has no known cause, Nester said. Patients most often notice symptoms like swelling and fatigue, as Williams did. Most people don't get diagnosed until they have "quite a significant burden of symptoms," she said.
At the time of Williams' diagnosis, there was no specific treatment for IC-MPGN available. Nester said that until 2025, standard treatment included steroids, immunosuppressants and even chemotherapy. They helped some symptoms, but didn't slow the progression of the disease, Nester said. Patients were told they had about 10 years between diagnosis with IC-MPGN and end-stage kidney disease. Even a kidney transplant only delayed the inevitable, because the underlying condition wasn't being treated.
"We were not fixing the problem. It was a horrible prognosis, frankly," Nester said.
Finding "freedom" in a clinical trial
Williams felt trapped. Dhingra was prescribing multiple medications, but they either made no difference or left her feeling unwell.
"For quite a while, I was just in a kind of fog," Williams recalled. "Knowing there wasn't a lot of options, it just felt like I had to make it work."
Then she received a surprising call in November 2024. Dhingra had learned about pegcetacoplan, a medication still in clinical trials, that was showing potential as a real treatment for IC-MPGN. Williams was nervous, but agreed to join the trial. She was enrolled in February 2025. Things took a turn immediately.
"Right away, we saw change. I was back to my feisty self. I felt like I had freedom back," Williams said.
Six months later, it became the first medication to be approved by the FDA for the treatment of IC-MPGN. The injectable medication is sold under the brand name Empaveli and is a "game-changer for patients," Dhingra said.
"We were suddenly able to stop using all that other crazy stuff we were doing. We were suddenly able to put patients in remission on targeted therapy, and ... stop using the other things that weren't working well anyway," said Nester, who noted the medication is FDA-approved for adults and children over the age of 12.
After over a year on the medication, Williams is doing significantly better, Dhingra said. She still sees him every other month for monitoring, but those visits will become more spaced out if her condition stays stable, Dhingra said. Day-to-day life is much more normal: Her swelling is gone and she is on far less medication.
"I don't have that paranoia over me anymore about what I eat, and getting enough sleep," Williams said. "It's kind of been a game changer. I just feel back to myself again."
Badenoch blasts 'moaning' female Labour MPs over Burnham jobs 'quota'
Kemi Badenoch has told Labour women to earn a job in Andy Burnham's Cabinet instead of demanding they are handed jobs because of their gender.
The Tory leader lashed out today amid reports that female MPs are demanding the de-facto new prime minister introduce a 50:50 gender split 'quota' in his government.
Amid reports that former foreign secretary David Miliband is being lined up to return to the role, possibly with his brother Ed as Chancellor, one female minister also complained that Burnham could not have 'more Milibands than women' in the top posts.
But in a scathing article in the Times today Mrs Badenoch told them to 'stop moaning' and get chosen on merit instead of retreating into 'more of the failed identity politics that is holding back our country'.
'There are many, many reasons why you shouldn't have any Milibands in the cabinet,' she said.
'But complaining that the boys haven't given them the right jobs or that the boys are taking all the jobs, just shows that Labour's women still don't get it.'
The idea of quotas was also attacked by Baroness Jacqui Smith, Labour's Skills Minister.
Asked by Times Radio if Mr Burnham should reserve jobs for women, she said: 'No, I think what Andy Burnham should be doing is building the very best team around him to change this country.'
A letter written by the Women's Parliamentary Labour Party has called on Mr Burnham to ensure a 50:50 split between men and women in government jobs
Amid reports that former foreign secretary David Miliband (above, right, in 2010) is being lined up to return to the role, possibly with his brother Ed as Chancellor, one female minister complained that Burnham could not have 'more Milibands than women' in the top posts
But Mrs Badenoch told them to pipe down and get chosen on merit instead of retreating into 'more of the failed identity politics that is holding back our country'
A letter written by the Women's Parliamentary Labour Party and seen by the BBC has called on Mr Burnham to ensure a 50:50 split between men and women in government jobs after he succeeds Sir Keir Starmer.
'We are asking you to demonstrate this change from day one and address the toxicity and misogyny within our own party and government,' it said.
Labour has never had a female leader, while the Conservatives have had three, and Mrs Badenoch urged the government to follow its meritocratic example.
'If you run a meritocracy, then you do not have to worry about jobs for the boys,' she wrote.
'Every woman who is a Conservative MP, every woman who has ever won the leadership, has had to fight to get where she is.
'By contrast, Labour women are demanding guarantees from Burnham. But the truth is he doesn't have to give any guarantees.
'If none of Labour's women are prepared to get their hands dirty and challenge him for the leadership, their demands are toothless.'
'In fact, it's quite revealing that the women's parliamentary Labour Party has written to Burnham asking him to commit himself to at least 50 per cent female ministers.
'This has nothing to do with meritocracy. It is yet more of the failed identity politics that is holding back our country.'
