Our Stories

Molly's Story

The summer after eighth grade in 1995 is when it all began. Most 14-year-olds look forward to high school and starting a new chapter in their life. However, I was facing something entirely different. 

Just a few months before, at a random school physical, I was found to have protein in my urine. These findings prompted my pediatrician to refer us to a pediatric nephrologist at the University of Illinois at Chicago Hospitals, and after several blood tests and a kidney biopsy, I received the devastating diagnosis -- I had FSGS.

Life as I knew it would forever change. I was quickly started on high doses of prednisone, which caused massive weight gain, excessive hair growth, mood swings, and a general ill feeling. I felt like a monster. Getting through a day at school was the hardest thing I had ever experienced.

I started cytoxan, a chemotherapy drug, when the prednisone stopped having an effect. Since the drugs suppressed my immune system, I was constantly vulnerable to illness and was left fighting viruses for much of my freshman and sophomore years. I was constantly hospitalized and I felt like my life was spinning out of control.

In the next couple of years things somewhat stabilized with a combination of drugs commonly used for hypertension and life got a little easier. I had achieved a partial remission! Eventually I graduated from high school, and managed to graduate from nursing school with only a few “bumps in the road.”

Today, I am married and working as an emergency room nurse. I am still fighting this disease and its horrible side effects, but feel lucky to have the wonderful medical care that I do. Although life is not always easy for me and I have limitations that most people my age do not, I continue to try and stay strong and keep motivated, hoping that soon, a cure will be found.

I'm not planning on giving up anytime soon!

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