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Focal Segmental Glomerulosclerosis (FSGS)

Marcelo P.

Adults

I share my story to offer hope and remind others they’re not alone. 

It’s ironic—almost poetic—that March is both Kidney Month and my birthday month. It’s also the month that, at just 10 years old, I was diagnosed with a life-altering disease: FSGS.   

No matter how dark it gets, no matter how unbearable the struggle feels, there is always a glimmer of light at the end of the tunnel. Do not give up. Keep fighting. Keep moving forward.

At 13 my kidneys were functioning at such a low level that in order to stay alive I was give two options — dialysis or a kidney transplant. 

My mother became my hero in the most profound way—she gave me life twice by donating one of her kidneys to me. But FSGS is relentless. Within months, it came back aggressively, infiltrating and ultimately destroying the gift my mother had given me.   

This disease, both a blessing and a curse, has kept me on dialysis for over two decades.   

The effects of immunosuppressants like prednisone changed me in ways I never expected. The recovery was brutal—physically, mentally, and emotionally. I never felt like myself. I was trapped in a haze of nightmares, hallucinations, and constant irritability. I carried so much pain, frustration, and confusion, trying to process what was happening to me.   

I know everyone’s experience with kidney disease, transplant surgery, and recovery is different. There is no one-size-fits-all answer. My only hope is that, whatever path someone chooses, it truly works out in the best way possible for them.   

Ask questions. Advocate for yourself. And most importantly, understand—a kidney transplant is not a cure. It’s just another form of treatment. 

The importance of having a spiritual or personal connection with our Creator—whether through prayer, meditation, breathwork, or yoga—cannot be overstated. It became my anchor, my source of strength when I felt completely alone. While my family offered love and support, they could never fully understand the depths of what I was going through. No one in my life had ever faced the kind of relentless, chronic illness that I did. That isolation was painful, but through faith and daily practices, I found the support I desperately needed.   

This journey has taught me focus, resilience, and purpose. I set both short-term and long-term goals, driven by a desire to serve others. After nearly a decade of doing home hemodialysis, my life has transformed—not just into survival, but into thriving.   

If there’s one thing I want people to know, it’s this: No matter how dark it gets, no matter how unbearable the struggle feels, there is always a glimmer of light at the end of the tunnel. Do not give up. Keep fighting. Keep moving forward. Seek knowledge, ask questions, and connect with those who have walked this path before you. Today, with social media and organizations like NephCure, we have the ability to find each other, to uplift one another, and to provide hope even in our hardest moments.   

Be the light. Show love. And together, let’s rise. 

💚 

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Update on FDA Decision About Sparsentan for FSGS | NephCure Town Hall

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NephCure Releases State Policy Recommendations to Improve Rare Kidney Disease Care

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