Thursday, October 6, 2011

NephCure Advocacy Day | The NephCure Walk

Yesterday was NephCure Advocacy Day for those affected by FSGS and Nephrotic Syndrome so I think it's a good time to share a little about our experience, bring awareness to these devastating kidney diseases.

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.

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
the disease 
often attacks the new kidney, 
A teenage boy's personal story, here.

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
Her dad, helping with another science project, has never removed his band

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Of Interest
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.


  1. Thanks for this very informative post, Lin!
    You have a beautiful family! I hope and pray that everything will turn out well for your daughter and everyone else with FSGS. I hope that someday, a cure will be found or a preventive measure will be created to eliminate this awful disease.

  2. Thanks so much Tina! We really appreciate your healing wishes.

  3. Linda, thank you for sharing this vital information. Thank God your daughter is in clinical remission. I pray for her total recovery :) God bless.

  4. Thank you so much for sharing your daughters story, my mother has end stage renal failure, and is on 3 day a week dialysis so this is near and dear to my heart. I am so glad that your daughter is doing so well. I hope and pray that they make advancements in finding a cure or maintenance program for FSGS. You and your beautiful family are in my thought and prayers!

  5. Thank you so much Debbie and Sharon. I'm sending healing thoughts your mom's way, Sharon.

  6. hi linda, thank you for the story and the information given here. Embarrassed to say, i've not heard of this disease, thanks again for sharing and creating its awareness.

  7. Linda- Very well done post about FSGS/Nephrotic syndrome. I don't how you held it together all this time. Well, actually, I do. You're a fantastic mother, an amazing person, smart and determined, and you go with your intuition. So many parents fail to do this--letting doctors talk them into treatments that may not be necessary.

    So, so happy that remission is still the word. I'll be clicking on that link!

  8. Hi Linda-Your post and story about the FSGS/Nephrotic syndrome is such an eye opener for people who have not even heard about this life threatening disease!

    You were so kind to explain all this to me several months ago, and I feel more knowledgable and wiser for it to be able to spread the word and help for the "cure."

    You are an amazing and wonderful mother. Your strength really helped heal your precious daughter, which in iteself is a miracle and a blessing! Her remission is a hope for all others suffering from this disease, and you and your beautiful family are a "perfect example" of how to fight it!

    Thank you for sharing your personal story and the important information regarding FSGS/Nephrotic syndrome!
    Hugs, and warm good wishes...may God Bless you all!

  9. Excellent post my friend. I hope that millions of readers see your blog and read this post. Your daughter is a beautiful girl and you are a wonderful mom. I pray that her remission holds for the rest of her life!

  10. Lena, Don't be embarrassed, we didn't know either until we learned my daughter had the disease. Thanks so much for taking the time to stop and comment.

    Jayne, Yes, you know and you were there to listen and support us when we needed it and still are. Thanks for all you do!

    Elisabeth, Thank you so much! And thank you for your concerns and sharing your story when I Iast posted something about her disease. It meant a lot to me.

  11. Thanks Linda (theorangebee), I hope so too!