The day after my 14th birthday, May 10th, 1999, I was admitted to the hospital after a urine test showed blood and protein in my urine. I went in to the doctor because I was experiencing swelling in my face, abdomen, and lower extremities. I was told that it was Nephrotic Syndrome and treated with Prednisone. It was treated as if it was just a condition that I would outgrow. I was even advised by one doctor that I was probably spilling out protein because I was playing sports at the time, and that sometimes happens with athletes.
After about a year of relapses I was placed on a secondary immunosuppressant: Cyclosporine. In 2008, after my first biopsy, I was officially diagnosed with Minimal Change Disease. It has been over 18 years now, and I have gone some periods where it’s been almost two years without a relapse. Other years it’s been every few months. No rhyme or reason to my relapses occurring. Sometimes I think it’s stress-induced, from a virus, or from seasonal allergies, while other times it seems like it’s from the way the wind blows. My kidney function is still great, but I’m currently going through a relapse now and have been since this summer. I have made the decision to be off of Cyclosporine due to some side effects, and am currently in my second week of Azathioprine.
For the first several years, I didn’t know one single person who was familiar with NS. I spent many moments explaining my condition to everyone, including medical professionals — yep, even doctors. I found NephCure online and have been involved ever since. Through NephCure, I have met some amazing humans that know and understand what living with NS is like. And beyond that, they are advocates in finding a cure and better treatments for all of us living with it. NS and the various rare chronic kidney diseases that come along with it can be very isolating and devastatingly redundant. Being involved with NephCure and research has made things easier to cope with.
As patients, we can be involved and be advocates for ourselves and others. By spreading awareness, showing up, raising money for walks and other events, and being involved in research (maybe that’s being part of a trial or just answering some questions for a survey) we can make a difference and further the progress of more efficient treatments and a cure. This disease is awful, but I’ve been introduced to some amazing people because of it, and whether I’m having a good day or not it definitely keeps me going knowing that I am involved in the fight against it.
Be your own advocate! Don’t be afraid to ask questions to doctors and medical professionals! Be involved — if you’re reading this then you know about NephCure! Help us in saving kidneys and saving lives! You are not alone. Every individual story is unique and sometimes it just plain sucks, but you are not alone in this journey. Reach out.