A child with nephrotic syndrome grows up to become a nurse

 

Rarediseaseday.org reported this story. Grace is 23 years old and a registered nurse.

"I was diagnosed with nephrotic syndrome when I was 9, and have been in and out of remission ever since. This illness causes me to rapidly gain water weight to the point it stretches out my skin and I can barely walk. To treat it, I have been put on high doses of steroids, immunosuppressants, statins and several types of chemotherapy. These medications caused severe weight gain, frequent illnesses from low immunity, hair loss, acne, and more. When I was 15, I wrote a patient guide for newly diagnosed Nephrotic syndrome patients that was published by an international nonprofit dedicated to raising awareness for the disease. 

I also did a research project when I was 17. I surveyed patients from different countries on their side effects of the medications they had to take, and the effects of those side effects on their emotional health then presented the results at a symposium. 

I decided to become a nurse because I know what it’s like to be in the hospital for weeks at a time and suffer from the side effects of the many medications Nephrotic syndrome patients must take. Side effects are a whole other disease itself." 

From Nephrotic to Nurse - Rare Disease Day 2025

Cheers!

Donna