en_US EN
en_US EN es_MX ES

RESOURCES

/

FIND A SPECIALIST

/

CONTACT

Home / Patient Stories

Patient Stories

From California to Sydney and everywhere in between, your tales of courage, optimism and perseverance resonate with us. But, more importantly, they give hope to other people impacted by FSGS and Nephrotic Syndrome.

We’re here for everyone impacted by these diseases no matter your age, gender or where you are in the journey. Are you a newly-diagnosed adult patient? Perhaps you’re the parent of a young child waiting for a transplant? Maybe you’re a teen in remission and feeling good? No matter who you are or where you live, we invite you to share your story and help others feel less alone, more inspired and more empowered in their journey.

share your story

Minimal Change Disease (MCD)

Dawn D.

I was diagnosed in 2018, after thinking I had the flu. I went to the hospital—kidney function was very low. They thought I was dehydrated, pumped me full of saline, ...

Minimal Change Disease (MCD), Nephrotic Syndrome, Other Glomerular Diseases

Helder L.

Hello, my name is Helder, and I was diagnosed with Minimal Change Disease, a form of nephrotic syndrome, at just 2 years old. Now, at 47, I’ve been living with this ...

Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Allie C.

I was diagnosed at five years old. I used to wake up with very puffy eyes, and my parents thought it was just allergies until we went to the doctor. ...

Minimal Change Disease (MCD), Nephrotic Syndrome, Other Glomerular Diseases

Keri B.

Hi. My name is Keri and I am a 34-year-old wife and mother who is diagnosed with Minimal Change Disease.  I remember my diagnosis like it was yesterday because it ...

C1q Nephropathy (C1q), Focal Segmental Glomerulosclerosis (FSGS)

Alyssa K.

My daughter, Alyssa, was at her 4-year checkup when her pediatrician informed me that her blood work showed high cholesterol. He referred us to a cardiologist, and for nine months, ...

Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Ruth S.

My FSGS story so far  In trying to put words down to tell my story, I needed to remember things I’d squashed and put aside for self preservations sake. Being ...

Minimal Change Disease (MCD)

Lauren S.

Diagnosed with MCD – Jan. 2021 at age 35.  First signs of MCD, Oct. 2020 swelling in ankles and feet. I was told by my nurse practitioner and primary care ...

Minimal Change Disease (MCD), Nephrotic Syndrome

Stephanie H.

I was diagnosed with Nephrotic Syndrome at the age of 2.5 after my mom took me to six different doctors to understand why I was waking up swollen and puffy. ...

Minimal Change Disease (MCD), Nephrotic Syndrome

Anthony S.

Anthony, my 5-year-old son, has been battling minimal change nephrotic syndrome since he was 2. Diagnosed after a bizarre swelling episode post-COVID, he’s become the “head-scratcher” for doctors due to ...

Focal Segmental Glomerulosclerosis (FSGS)

Marcelo P.

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, ...

Focal Segmental Glomerulosclerosis (FSGS)

Johnathon A.

Johnathon was diagnosed with genetic FSGS at the age of 9. In July of 2024 Johnathon was referred to a nephrologist because he had 3 checkups in a row with ...

Focal Segmental Glomerulosclerosis (FSGS), Nephrotic Syndrome

Melissa M.

For a while, I would have flu like symptoms on and off, and no one else around me would be sick. The nausea, dizziness fatigue and sometimes vomiting was not ...

Sign up to get NephCure’s latest updates.

SIGN UP
This field is for validation purposes and should be left unchanged.
NephCure Logo

INTRO TO RKD

Overview
Types of RKD
Navigating New Diagnosis
Pediatric Care
End-Stage Kidney Disease

SUPPORT

Patient Navigation Services
Online Patient Community
Patient Stories
Support Groups
Resources

MANAGING RKD

Find a Specialist
Clinical Trials
Treatment Options
RKD & Mental Health
Diet & Nutrition
Genetic Testing

LEGAL

Careers
Privacy Policy
Policies & Disclaimers
Financials

ABOUT US

Our Impact
What We Do
Team
Current Partnerships
News
Contact Us

GET INVOLVED

Volunteer
Events
Advocacy
Find your Local Community
Ways to Give

Our Mission

NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care.

Find Us On

NephCure is a registered non-profit (501c3) tax-exempt charitable organization. EIN # 38-3569922.
© Copyright 2024 NephCure, Inc. All rights reserved worldwide. NephCure, and the logo, are federally registered trademarks of NephCure, Inc.