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

Nephrotic Syndrome

Ayeza B.

My daughter’s name is Ayeza. She was diagnosed with CNS at only 1.5 months old. The doctor told us that children with this disease only survive until they are maximum 2.5 years old. Immediately they started her on medications and at the age of 4 she diagnoses kidney disease. And she was referred for dialysis. After 4 months of dialysis, we started her kidney transplant process. As her father I am in hope that she gets the kidney transplant without augmentation. Once the reflux clears up, I will hopefully be able to donate my kidney to her in the meantime ... Read more

Focal Segmental Glomerulosclerosis (FSGS)

Salina G.

Like many other people around the globe, spring of 2020 changed my life forever but, it was not solely because of Covid-19. While we were processing the premature death of several people within our community of friends, my body began to feel very different. Until this point I had been a fairly healthy person. In April 2020, for the first time I began to feel extremely fatigued and I noticed that my urine was very foamy, almost like the top of a beer. After about a month things seemed to get worse. I scheduled an appointment with my primary care ... Read more

Nephrotic Syndrome

Sawyer R.

Sawyer’s journey began at the tender age of 4, marked by distressing symptoms that initially led to a diagnosis of constipation. However, a persistent feeling urged her family to delve deeper into her health concerns. A pivotal moment came when Sawyer’s body began to swell, prompting urgent action and a trip to the local military hospital ER. In the wee hours of the morning, the diagnosis was confirmed: nephrotic syndrome. Suddenly, an article glimpsed online became a roadmap for their journey, a journey filled with uncertainty and determination. Through every trial and triumph, they’ve emerged stronger, united in their fight ... Read more

Focal Segmental Glomerulosclerosis (FSGS)

Imani M.

In 2016, at the age of 23, Imani Mintz received a diagnosis of FSGS. Following a comprehensive blood panel, the results indicated that Imani had stage 3b kidney disease. After an extensive investigation to rule out other diseases, such as lupus, and a biopsy, Imani was officially diagnosed with FSGS. Imani grappled with intense fatigue, initially attributing it to job-related stress. Additionally, she observed foam in her urine. The challenges of undergoing dialysis for nearly two years took a toll on Imani, making it challenging to maintain employment and relationships. “I often found myself having to undergo dialysis on days ... Read more

Membranous Nephropathy (MN)

Joe H.

My name is Joe Hawkins and I am 59 years old. I am a U.S. Navy veteran and settled in rural Utah after 20 years of service. I am happily married to Janna for nearly 35 years...

Membranous Nephropathy (MN)

Dan H.

Dan is from Baltimore, MD. Who is living in Florida and served in the US NAVY from 2003 to 2008 as a Special Operations Search and Rescue Veteran that was involved in a...

Membranous Nephropathy (MN)

Seferiana D.

Seferiana Day was diagnosed with Primary Membranous Nephropathy and Stage 1 Chronic Kidney Disease in February 2016. An otherwise active and healthy 30 year old...

Membranous Nephropathy (MN)

Eric H.

Eric is a 54-year-old attorney, musician, husband and father of two teenagers from Fanwood, New Jersey. In the Spring of 2019 his cholesterol skyrocketed and he...

C3 Glomerulopathy (MPGN)

Chase G.

In 2009, Chase Gallagher, at the age of 8, was diagnosed with Type III MPGN now known as C3G.  Chase’s primary pediatrician originally misdiagnosed him...

C3 Glomerulopathy (MPGN)

Lindsey F.

Lindsey Fuller has a rare form of hereditary C3G. Her grandfather died of renal failure, and her father had four transplants over the course of 20 years...

Focal Segmental Glomerulosclerosis (FSGS)

Teleya B.

I have APOL 1-Associated FSGS. I was diagnosed when I was 14. For 20 years, I’d been stable only escalating to Stage 3b in my 30’s...

Focal Segmental Glomerulosclerosis (FSGS)

Jorden A.

In 2022, at the age of 24, Jorden Albright-Henighan was diagnosed with chronic kidney disease. It was later confirmed by renal biopsy to be APOL-1 FSGS...

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