My daughter was diagnosed with FSGS (scarring of kidney filters) in February 2008 at the age of 12. This was such a shock since she had no outward symptoms. During her annual physical examination in November 2007, high levels of protein were detected in her urine through a routine test at her pediatrician's office. After more sophisticated tests eliminated possible causes for her protein loss, she underwent a kidney biopsy which confirmed FSGS and which also showed signs of collapsible FSGS, the most aggressive form of FSGS.
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| The letter she wrote in a Letters For Life campaign for The NephCure Foundation |
When we got the diagnosis, we didn't immediately comprehend the severity of the disease. Her nephrologist was calm; the news didn't sink in right away. He told us what medicine she would need and to start a reduced-sodium diet immediately. We were given a prescription and a packet with dietary instructions. It wasn't until we started researching FSGS on the internet later that night that we panicked and made an emergency call to him. We were back in his office the next day asking a ton of questions. He still seemed calm and was reassuring. Of course, we sought a second opinion from another nephrologist at The Children's Hospital in Boston. He wasn't as calm or reassuring. He told us she'd likely need a kidney transplant in about two years, basing his opinion on statistical knowledge and from her biopsy report, and he'd place her on steroids. The drive home was emotional. To hold back tears and avoid upsetting our daughter even more, we couldn't look at each other during the hour ride home.
We ultimately decided to continue treatment with her first nephrologist. It was just intuition. We liked his personality and his conservative approach made sense because, while her proteinuria was severe and, yes, her kidneys were scarring, she did not present with other nephrotic symptoms to treat. Of course, treatment would change if her condition didn't. The nephrologist at Children's would have immediately placed her on steroids which I didn't think she needed and neither did her first nephrologist. Turns out that we were right and spared her the side affects, discomfort, pain, and embarrassment of steroid treatment. This is not to say that this is the protocol for others; the disease and its treatment are different for everyone. That is one reason it's so frustrating.
Thankfully, my daughter responded immediately to medication: Prograf (tracrolimus), to suppress her immune system, and Lisinopril, to lower her blood pressure. When her cholesterol spiked, she was placed on Lipitor. Soon, her bloodwork showed remarkable results and she was on her way to clinical remission. She is still in clinical remission today. We are slowly weaning her off Prograf, and again, with remarkable results. We couldn't be more blessed. But each time that we are scheduled to visit her nephrologist, we hold our breath.
We now know why her nephrologist was calm. Aside from how she presented, he believed we caught the disease early. The routine protein screen at her pediatrician's office was critical in early detection.
Many others affected by FSGS and Nephrotic Syndrome are not so blessed:
And, when a patient with FSGS
receives a kidney transplant
receives a kidney transplant
Taking Steps To Find A Cure
Why do we walk? We'll be walking for a cure, to raise awareness of FSGS and Nephrotic Syndrome, and to support this amazing organization which is a very important part of our family's life. Who is The NephCure Foundation? It is an organization made up of "patients, parents, siblings, aunts, uncles, grandparents, friends and relatives . . . Who are we? We are you.", founder Lou Antosh, including doctors and scientists. Also, the NephCure Foundation is the only organization committed exclusively to finding a cure for FSGS and Nephrotic Syndrome.
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| Her brother's science project in 6th grade about FSGS |
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| Her dad, helping with another science project, has never removed his band |
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A personal story that was posted on the Huffington Post yesterday for NephCure Advocacy Day, "My New Kidney"
A video explaining FSGS and Nephrotic Syndrome and their medical challenges, Here.
A video explaining FSGS and Nephrotic Syndrome and their medical challenges, Here.
