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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

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 ...

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 ...

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...

Focal Segmental Glomerulosclerosis (FSGS)

Nicholas A.

When I was 17 I was diagnosed with kidney disease called FSGS. This was 1 year after my little brother had been diagnosed with the same thing...

Focal Segmental Glomerulosclerosis (FSGS)

Amber H.

When I was eleven years old, I had ongoing swelling that no one could figure out the cause of. Every time we made an appointment to see my pediatrician, the ...

Focal Segmental Glomerulosclerosis (FSGS)

Jazrome C.

Jazrome was diagnosed at the age of 29. The onset of the diseased started when he was 27, resulting in him to be hospitalized for irregular heartbeat.

Focal Segmental Glomerulosclerosis (FSGS)

Tiffany L.

Tiffany Lymon was diagnosed in August of 2020. Prior to her diagnosis, she noticed symptoms such as rapid weight gain...

Focal Segmental Glomerulosclerosis (FSGS)

Kimberly Q.

Kimberly was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) at the age of 25. Kimberly made an appointment with her doctor because of major swelling in her legs...

Focal Segmental Glomerulosclerosis (FSGS)

Kevin M.

In 2002, Kevin found himself suffering from debilitating migraines. As they got worse Kevin decided to see a doctor and learned that his...

Focal Segmental Glomerulosclerosis (FSGS)

Jenn T.

Jenn Trunk had a routine physical in 2005 that showed protein in her urine. She was quickly referred to a nephrologist who...

Focal Segmental Glomerulosclerosis (FSGS)

Jen M.

After noticing her ankles were the size of grapefruits, Jen was diagnosed with FSGS at age 17. Maintenance medications...

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