By Michelle Williams, as told to Hallie Levine
Michelle Williams, 46, was diagnosed with IC-MPGN in 2024. She struggled with symptoms of this condition for years. Here, she shares what life with this rare disorder is like.
I'm a busy working mom. If I'm tired, my first instinct is to push through. So when I began to have vague symptoms like fatigue, persistent swelling, and high blood pressure in 2020, I thought it was just stress. I had a busy job as a director of financial services at a local university and two young kids at home. We had just moved into an old charming farmhouse, and I had to supervise the renovation.
My doctors lectured me about stress and poor lifestyle. But it wasn't either. It took more than a year of misdiagnoses and testing before I learned I had primary IC-MPGN, a rare and serious kidney condition. While it was scary, there's been a happy ending to my story. I've responded well to a new medication, pegcetacoplan (Empaveli), that's allowed me to better manage my life.
But I also don't want anyone else to have to deal with the fear and confusion I went through as I tried to figure out what was going on with my body.
Here's what I've learned as I navigate life with IC-MPGN and advice I'd give to anyone newly diagnosed.
Don't brush off symptoms
I downplayed my symptoms for a long time. Yes, I was exhausted. But was it because I was middle-aged? A working mom? Possibly in perimenopause? It seemed there were all sorts of reasonable explanations for the fact that I was tired, my blood pressure was persistently high, and my legs were always swollen.
My doctor ignored my concerns, too. I thought it was odd that we never could seem to get my blood pressure under control. I'd go on a new medication that would work for a few weeks, and then we'd have to adjust it again. My doctor thought I was just stressed, especially since my blood pressure was never alarmingly high. It would always hover around 140/80.
Other symptoms just seemed to sneak up on me. In the fall of 2022, I noticed that I was always cold. Then I had to buy bigger shoes. I noticed swollen legs, so my doctor suggested compression socks. When I took them off at night, my feet, ankles, and legs turned into big puffy balloons.
When I mentioned all these symptoms to a good friend, I expected her to laugh and commiserate with me about life in our 40s. Instead, she became very quiet and told me she thought I should make another appointment with my primary care provider.
Thankfully, there was a new physician assistant in my primary care provider's office who decided to order extensive bloodwork. When laboratory tests showed that my kidney function was off, she referred me to a specialist.
Get a second opinion
I never got to see the kidney doctor when I went to the practice. I met with a physician assistant who didn't even glance at my lab work. We spent the entire time talking about my kids. She told me I was stressed and to get my blood pressure under control and come back in six months.
When I got into my car, I started to cry. I thought, "If I don't do something now, I will be dead in six months."
Thankfully, my mother-in-law stepped in. She'd recently donated a kidney to my father-in-law so that he could have a kidney transplant at the Cleveland Clinic, which was two hours away. She called them and got me an appointment right away. I ended up being hospitalized for a couple of days while they ran tests.
Even then, I wasn't diagnosed with IC-MPGN. Tests revealed I had a very early form of multiple myeloma, a type of blood cancer. My doctors assumed that was what had impacted my kidneys.
Six months later, I finished myeloma treatment, but my kidney function hadn't improved. By then, it was April 2024. My struggle with mysterious symptoms had gone on for almost four years.
My doctors were thoroughly baffled. All my blood tests pointed to severe kidney damage, but they also didn't think my multiple myeloma or its treatment was the cause. Finally, they did a kidney biopsy. The results were consistent with damage that's linked to IC-MPGN.
I honestly don't think I would have gotten this diagnosis if I were at any place other than the Cleveland Clinic. IC-MPGN is incredibly rare – it's estimated that only about one in a million people have this condition.
While I was grateful to get the diagnosis, I was also confused. I felt like my doctors didn't explain the condition to me very well. To be fair, they didn't have much experience with it. I'm currently my kidney doctor's only patient who has IC-MPGN, and I'm at one of the nation's top medical centers. But I got the diagnosis on my daughter's ninth birthday. It was horrible to get such grim news, and then have to force myself to smile and carry on as if nothing awful had happened.
Ask about new treatments
While I was relieved to have a diagnosis, I still felt like garbage. My kidney specialist had me take mycophenolate, which is an immunosuppressant. Doctors usually use it to prevent your body from rejecting an organ transplant. It's also sometimes used to treat IC-MPGN. It's thought it can help stop your immune system's attack on the filtering units in your kidney (called glomeruli). But it didn't seem to help me.
Then, in October 2024, my life changed. My kidney specialist called me one day while I was at work to tell me that he was at a conference where he'd learned about a new drug that's currently in clinical trials to treat IC-MPGN. He explained that the medication was a type of drug called a complement C3 inhibitor. It inhibits a blood protein called complement 3, or C3, which is thought to play a role in kidney diseases like IC-MPGN.
When he asked if I wanted to sign up for the trial, I told him sure. I felt like I'd hit rock bottom, and I had nothing left to lose. I had to get certain vaccinations, like the pneumococcal and meningitis vaccines, before I started the drug. By the time I was ready to start in February 2025, it was too late to join the trial. I was still able to get the medication through the FDA's compassionate use program. It was granted FDA approval for IC-MPGN in July 2025.
I didn't have much hope when I started the medication, but I saw results pretty quickly. After about two weeks, I noticed that I had more energy, and my legs were less swollen. My kidney function numbers were trending in the right direction, too.
After about a month, I truly felt like I was back to my regular self. I felt like the me of 2019, before symptoms started. I had energy and focus again. My swelling completely disappeared. For years, I'd battled with blood pressure that would go as high as 200/100. I had terrible headaches and chest pain. I was afraid to drive my kids anywhere because I worried I'd have a stroke in the car. And suddenly now my blood pressure was 115/60.
My kidney specialist says my IC-MPGN is now in remission. I went from stage three kidney disease to 100% normal kidney functioning. He jokes he doesn't know what to do with me, but there's truth behind his words. We don't know what my future will look like. Will I stay in remission forever? Or will the drug eventually stop working? There are a lot of unknowns.
Stay on top of your IC-MPGN
Even though I'm technically in remission, I'm still very careful when it comes to my kidneys. I have remained on a low-sodium diet, for example. We rarely, if ever eat out, as restaurants and packaged foods have so much salt. If we go on vacation, we book hotel suites with kitchens, so we can cook our own meals.
I also try to talk about my IC-MPGN with others. It's so disappointing that I went for years without the right diagnosis. I spent months and months going to doctors and being lectured about my diet and exercise. There needs to be more awareness about kidney disease, especially rare kidney disorders like IC-MPGN.
Finally, I realized how important it is to reach out and get support from others. The maker of pegcetacoplan does have a patient website, rarekidneyandyou.com, where I was able to connect with people who live with IC-MPGN. It's so rare, so it was very helpful to talk to others who have had similar experiences with diagnosis and treatment.
I still see my kidney specialist every couple of months. Now that I am in remission, I will be able to see him less, but it's still important to stay on top of any necessary bloodwork. At some point, my IC-MPGN may progress, and we'll need to talk about other options, like clinical trials or even a kidney transplant.
Right now, I live life day by day. I throw myself into my job, my kids, and yes, the management of my old rustic farmhouse. I don't take anything for granted. It feels like I've been given a second chance at life.