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Belle's Story

 photoShe initially was misdiagnosed by an immunologist at our local hospital. During our three-week stay at the hospital, I felt so alone and scared, thinking we were going to lose my daughter. She was finally diagnosed with Nephrotic Syndrome. I thought by having the answer, Belle would be fine, and get some help through treatment. Little did we know that was only the beginning of the battle.

The nephrologist finally got Belle's symptoms under control. Belle was on prednisone for over two years, which was another battle within itself due to all the side affects. Finally, I decided I was unhappy with the care she was getting from the only pediatric nephrologist in our state so I looked elsewhere. I found a wonderful physician in Memphis who decided it was time to wean Belle off the prednisone. She explained to me that the chances of relapse were high but she agreed it was time to give it a try.

Belle has been steroid free since the beginning of 2011! We recently got another pediatric nephrologist in our state and he is wonderful! My advice to parents is to take charge of your child’s care, not to be afraid to ask questions and to learn about the disease.

I found the NephCure website over two years ago when Belle was diagnosed and it was amazing to have so many questions answered in one place. I am now working with NephCure to start up a group who will meet in our area and help other parents understand this illness. My prayer is that my daughter Belle can stay healthy on her current medications so that she can live a normal, happy and healthy life. 
 
 

 

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