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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 ...

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 ...

Focal Segmental Glomerulosclerosis (FSGS)

Traejen K.

Traejen was diagnosed at 3 years old with Focal Segmental Glomerulosclerosis (FSGS). He went through the routine of steroids, immunosuppressant drugs...

Focal Segmental Glomerulosclerosis (FSGS)

Lauren H.

Hi, my name is Lauren Hicks, In May 2018 my entire life changed. Receiving the diagnosis, you feel lost unfortunately, it doesn't come with a handbook...

Focal Segmental Glomerulosclerosis (FSGS)

Macy H.

Macy Helm was diagnosed at the age of three with Nephrotic Syndrome in 2009, when she presented with swollen eyelids...

Focal Segmental Glomerulosclerosis (FSGS)

Brooke F.

Brooke's journey with Nephrotic Syndrome began on Memorial Day weekend in 2018. She was only three years old and was on...

Focal Segmental Glomerulosclerosis (FSGS)

Davis S.

Davis’ Rare Kidney Disease story started 2 years ago when he was 12 years old and in the 6th grade. He had sudden and extreme swelling that was particularly pronounced in his eyes and ankles....

Nephrotic Syndrome

Emma Kate C.

When Emma Kate was almost 3, we noticed her swelling. Then, she ended up getting sick for days, not eating, or going to the bathroom. Thankfully, her doctor was attentive to what I told her...

Nephrotic Syndrome

Tyler and Jaxon L.

Tyler and Jaxon began their journeys at birth but went undiagnosed for their first few years of life. We noticed swelling around their eyes and bellies but it was always considered to be related to seasonal allergies...

Nephrotic Syndrome

Cooper C.

During the Spring of 2010 (March 1), Cooper’s mother (Heidi) arrived home from a business meeting and had been gone 2-3 days. When she left, Cooper had a viral infection, runny nose and cough...

Nephrotic Syndrome

Morea C.

Morea Cummings presented with a virus at just 7 weeks old. While in the hospital, it was discovered that she was spilling protein in her urine...

Nephrotic Syndrome

Jordan J.

In 2012, at the age of four, Jordan James was diagnosed with Nephrotic Syndrome. He was living a "normal" life in Los Angeles, California until he started experiencing swollen eyelids...

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