Living with FSGS: How I Found My Tribe

In late June, I attended my first-ever NephCure Patient Summit in New Orleans, an event created to bring together people affected by rare kidney disease.

I was amazed by how many people were there and who also live with FSGS. And it wasn’t just patients. There were family members, caregivers, advocates, healthcare professionals, and allies—all gathered in one place to learn, connect, and rally around the rare kidney disease community. For the first time, I was surrounded by so many people living with rare kidney disease—including people with the same disease I have: FSGS (Focal Segmental Glomerulosclerosis).

Not gonna lie, one of my first thoughts was, “Well, I guess I’m really not that special!”

Not that I’ve ever really viewed myself that way, but other people have sometimes made me feel that way because of everything I’ve been through. For most of my life, my story has felt unusual, but business as usual too because this is my norm...I don't know what it's like to be normal and healthy. At the Summit, suddenly, I was surrounded by people who understood parts of my life without me having to explain them.

And that was an incredible feeling.

A New Era for Rare Kidney Disease

One of the most exciting things I learned was just how much the treatment landscape for rare kidney disease is changing. There are now 10 FDA approvals, 16 treatments in Phase 3 trials, and 31 in Phase 2 trials—57 active treatment opportunities. How amazing is that?!

As of April 2026, Filspari became the first FDA-approved treatment for FSGS.

When I was diagnosed in 2006, there were no targeted treatment options for me.

My reality was a heavy dose of steroids, waiting for my kidneys to eventually fail, then dialysis—with the hope that I would survive long enough to receive a transplant.

That was it.

Realizing I Wasn’t Alone

Another meaningful part of the Summit was meeting other transplant patients who experience some of the same side effects and symptoms that I still deal with.

For years, certain things have made me question myself: Is this really happening? Is this normal? Am I imagining how severe this feels?

Living with FSGS - Meeting other people who said, essentially, “Me too,” reminded me that I’m not crazy and that I am actually experiencing these symptoms.

Some of the symptoms and side effects I experience include moon face, weight fluctuations, swelling in my feet and face, edema, tugging sensations around my transplant site, excessive sweating, a weakened immune system, hormonal imbalances, and bubbly or foamy urine. Yes—my pee is foamy!

Long-term steroid use has also weakened my bones more than would typically be expected for someone my age. I sweat much more easily than most people. I have adrenal insufficiency, meaning my body doesn’t produce enough natural cortisol on its own.

Real talk, one of the hardest things for me to talk about is what steroids can do emotionally.

They cause persistent mood swings, anxiety, depression, irritability, lethargy (sleeping for a full day), and insomnia. Sometimes I can feel unhappy without having a clear reason why. Other times, I can become incredibly irritated. I can recognize it happening. I can see myself reacting differently than I normally would, and yet sometimes it is incredibly difficult to control.

Those are the parts of chronic illness people don’t always see. It's an invisible disability.

Just because I got a transplant doesn’t mean every struggle suddenly disappears. It's a catch-22. We can save your life for now, but you will still struggle and forever be at risk.

A Story That Gave Me Hope

I also heard an incredible story from someone I can now call my friend, Traejen, who also has FSGS. His FSGS was so aggressive that his first kidney transplant failed almost immediately. 5 years ago, he underwent a stem cell transplant. He is the first person in the world to be cured of FSGS. He then received his second kidney transplant about a year later, and he has been doing great.

Finding My People

More than anything, I left New Orleans with an overwhelming sense of community and a deep sense of belonging. It’s almost as though we telepathically know we’re different from most people, but somehow we’re kindred souls. There’s an unspoken understanding among people who have lived through rare kidney disease, dialysis, transplantation, and everything that comes with it.

It’s a look that says:

I know.

I understand.

You don’t have to explain this part to me.

And finding people who understand those pieces of you is something I didn’t realize I needed so badly.

What’s even crazier is how I found my way here. Five years ago, around the fifth anniversary of my transplant, NephCure discovered my page and began following me. I tried to get involved at the time, but for whatever reason, the connection never fully came together. Years later, present day, March, while I was hosting an event for the National Kidney Foundation, one of the award recipients told me about NephCure.

When we went to exchange information, we realized something incredible: he had actually messaged me around the same time NephCure originally found my page years earlier.

I remember thinking, No way. For a moment, I thought about how I could have become involved all those years ago. But maybe I wasn’t supposed to. Sometimes we find the right people when we’re finally at the point in our lives when we’re meant to find them. Everything happens for a reason, and I truly believe God’s timing is perfect.

Maybe five years ago wasn’t my time. Maybe now is.

I am incredibly thankful to NephCure for bringing this community together and for giving me the opportunity to meet people who understand a part of my life that can be difficult to put into words. I went to New Orleans thinking I was attending a patient summit. I left realizing I had found a tribe.

A community of patients, survivors, caregivers, advocates, families, and people fighting for a future where a rare kidney disease diagnosis doesn’t have to mean the same thing it meant for me in 2006.

We’ve endured the medications.

We’ve endured the uncertainty.

Some of us have endured dialysis, organ failure, and transplantation.

We’ve survived.

And now, together, we get to help create something even more powerful:

Hope for the people who come after us.