Katie P.

Adult, Minimal Change Disease

I was diagnosed with Minimal Change Disease during my freshman year of college. During my last final of freshman year, my stomach, fingers, and eyelids were swollen, and it was painful to walk. During my winter break I got the diagnosis: Nephrotic Syndrome, Minimal Change Disease.

When I was first explaining my diagnosis, it was incredibly difficult. The details of the illness aren’t sexy. It’s not a disease that garners much attention. Every time someone asked me about it, they’d never heard of it. I couldn’t blame them — I hadn’t heard of it before my diagnosis either.

After going on Prednisone, I went into remission within a couple weeks. Unfortunately, I relapsed five months later and had to go on both Prednisone and Cyclosporine. While taking high dose Prednisone, I developed Cushing syndrome due to the increased cortisol levels in my body. The symptoms are mainly physical: weight gain, hair loss, and thinning skin. My entire body changed and I lost a lot of confidence.

I am no longer on Prednisone. Thankfully, almost all of my Cushing syndrome symptoms have disappeared.

I’m lucky to be managing my disease and to have such a great nephrologist. However, I have had a difficult journey to get where I am. I became depressed after the diagnosis when I could no longer continue my ROTC scholarship or qualify for military service. It was also difficult for me to accept that I couldn’t control my appearance.

My journey isn’t over though. I am fortunate to have an incredible support system who’s been with me through every struggle this disease has brought. I’ve learned to become an advocate for myself and others with chronic and invisible illnesses. I am excited to work towards my dream of attending graduate school and becoming a pediatric genetic counselor.