Mayah, a college student with primary hyperoxaluria type 1 (PH1), goes through a few of her most memorable moments with the 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.
Mayah shows a piece of a kidney stone that had to be removed through her back in 2018. After the stone was removed, Mayah says she had a disagreement with her physician who wanted her to walk around her college campus with a urine bag. Living her life as normally as possible is important to Mayah so it is especially frustrating when she feels doctors see her only as a patient rather than a person.
Mayah also briefly talks about what it was like to be a kid with PH1. As she explains, there were periods where she was teased and had very few friends because her classmates noticed her leaving the room to take her medication or because she was the only one allowed to have a water bottle at her desk.
Finally, Mayah describes a recent trip to a hospital where she tested positive for COVID-19 on top of needing kidney surgery.
To learn more about PH1 and other rare kidney disease, visit checkrare.com/diseases/kidney