Living With and Confronting MCNS

by Chris Higham

Originally from England, I'm a 43 year-old male with Minimal Change Nephrotic Syndrome (MCNS). I was first diagnosed in 1974 when I was 16 years old. I was an active participant in sports until swelling of the eyelids in the morning progressed to ankle and more severe stomach swelling later. Our family doctor said I was just growing up, so I ignored the symptoms.
I went on a school skiing trip to Italy in the winter of 1974 and returned home so sick I had to go to bed as soon as I hit the door. More tests revealed protein in my urine. I was admitted to the hospital immediately and treated with prednisone for six weeks. I responded favorably and went back to school, supposedly healthy within two months. After another three weeks, I relapsed and went back into the hospital for a biopsy and further tests. Again I responded to treatment and several weeks later, I relapsed again.

The doctors always prescribed the same treatment and advised me to take life easy. I refused to ever change my lifestyle. I have relapsed probably 35-40 times over the last 25 years or so. I've taken prednisone, cyclophosphamide, etc. with no apparent success. However, I've always continued to enjoy life to the fullest. I've been told my kidneys would not last and my cholesterol level will kill me. My kidneys are fine and I had an angiogram 12 months ago revealing no blocked arteries. I feel great. I'm active, and when I relapse, I've postponed steroid treatments to see if the relapse would subside on its own, and there have been times when it has done just that.

My urine consistently contains protein, but I eat well, play soccer regularly and have an active job. I have three boys, all of whom have excellent kidney function, and consider myself very fortunate. I understand I'm lucky I respond well to steroid treatments, but I just wanted to share my experience with you all just to show that this ailment is not the end of the world. I may die tomorrow, but I've never let this sickness rule my life.