John Cataldo, a 29-year old who was diagnosed with primary hyperoxaluria type 1 (PH1) at age 4, describes what it was like growing up with a rare disease.

PH1 is a rare genetic disease in which excessive oxalate production leads to painful and recurrent kidney stones. These recurrent stones increase the chance of hematuria, urinary tract infections, and end stage renal disease (ESRD). In November 2020, the U.S. Food and Drug Administration (FDA) approved lumasiran to treat PH1.

According to Mr. Cataldo, experiencing the symptoms of his disease at a young age was problematic. Most notably, he remembers being scared having to pass kidney stones around age 6. However, as he grew up, he began to manage his symptoms by drinking a lot of water and being proactive when he started to notice pain. Mr. Cataldo also mentions the social difficulty of having a disease that does not make him look outwardly sick but will require him to drink five to six liters of water a day.

To learn more about PH1 and other rare kidney diseases, visit