Our Story

Princess' Story:
My name is Princess and I was diagnosed with Nephrotic Syndrome in 2008 when I was 17 years old.

During my senior year of high school in Clarksville, TN, I was in show choir taking part in a workshop for our next concert when I found that my ankles were swelling. I went to the hospital on military grounds and they dismissed it as a urinary tract infection. As it continued to get worse, I went to the hospital on civilian grounds and receive the same diagnosis. It wasn't until my forehead was completely swollen over my eyes that the hospital took notice.

I was rushed to Vanderbilt and immediately told I had NS. Doctors had a problem trying to figure out what caused my NS. It wasn't until a few months had passed that we figured out it was Membranous Nephropathy. But we still have yet to figure what caused that.

When I was first diagnosed, I was getting protein infusions every two weeks. About a half a year later, I ended up in kidney failure and I was put on dialysis. I am mainly on blood pressure medication to keep it down.

I've faced so many struggles with this disease. As a teenager becoming an adult, I have faced mental and emotional problems. Being in the hospital the day before Prom and Graduation, I was afraid I was going to miss out on what were supposed to be the best years of my life. Seeing all of my friends enjoy their new found freedom, while I'm being invaded by needles and tubes is hard for anyone to understand.

Physically I was very unstable. I was constantly admitted to the hospital. At the beginning of 2009, I was admitted for a month. As soon as I was released, I suffered from respiratory failure and fell into a coma for a week. My family was told there was a possibility I wasn't going to make it. When I finally woke up, I recovered unexpectedly fast, except for my legs. I had no use of my legs. I could feel everything done to them, but I could no longer move them on my own. I was put into in-patient rehab for about a month.

My mother, sister and niece were there everyday, helping me and keeping my spirits high and providing me my biggest motivation to leave. I would say I spent an equivalent to a whole year in the hospital. I have yet to receive a transplant.

I'm doing much better than when I was first diagnosed. Still, I have a few problems like unknown diagnoses and pain. But I can't complain, because I almost lost my life due to this disease and I'm still here.

I pray I can get the awareness out for this disease. If I'm having this much trouble physically and mentally, I can only imagine what younger kids and their families are suffering through. I just want to help make it easier for them.

I hope in sharing my story, someone will read it and see that they're not alone.

Share your Story
Your story could provide support and information to many patients and their families. If you would like to share your story, email NephCure at info@NephCure.org.

By submitting your story you agree to allow NephCure to share your information and photo for marketing and promotional purposes.