NephSpace – Nephrotic Syndrome & FSGS Support Group

The NehpSpace Support Community connects patients, families, friends and caregivers for support and inspiration...
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In The Beginning. . .

by kittyhawk

New reply 3:27 am

7 replies

Children with FSGS

My 16yr old son was just diagnosed with FSGS. We found out when getting him tested for a cause of his Enuresis. After the urologist had done what he could do, my son was referred to a nephrologist who ordered more tests. These turned up 2600mg of...

17 month old just diagnosed with NS and I feel so lost!

by Ashley Christian

New reply 2:13 pm

13 replies

Children with nephrotic syndrome

Hi, My foster daughter Olivia (who, along with her twin sister are soon to be adopted by us) was just diagnosed with NS 8 days ago. I feel so sad for her as she's been dealt a lot of really awful cards in life and now this. She was diagnosed in...

Questions about Cytoxan/cyclophosphamide

by annejohn2

New reply 1:08 pm

2 replies

Adults with nephrotic syndrome

I have MCD and am steroid dependant. In a couple weeks I'll be starting a new treatment (Prograf and Cyclosporine in conjunction with Prednisone didn't work - taken at different times) and my doctor is thinking we could try Cytoxan followed up with...

Using Protein Sticks

by frankamend

New reply 12:46 pm

5 replies

Adults with FSGS

My nephrologist wants me to start using protein sticks to monitor my urine protein levels. Where do I get them? How to use them? Thanks for your insights!

Question for parents with children weaning/weaned off of Prednisone

by storaloppan

New reply 12:41 pm

4 replies

Children with FSGS

I took prednisone twice in my life, and both times did a VERY slow wean (4-5 months). And even then, I experienced some side effects. I'm curious for you parents...what do doctors recommend to be an appropriate weaning strategy for kids? The...

Fluctuating Protein Levels

by harger921

Adults with nephrotic syndrome

I was diagnosed with Membranous Nephropathy in March. I have been testing my protein levels in the morning as recommended with the protein levels being at 3+ daily. At the beginning of May, I went gluten free and within a week saw some changes in the...

Did you just recently find out about The NephCure Foundation?

by Uju

If so, we would like to show you around and tell you all about the resources we have available for patients, their families and friends. Join us in the "New Patient Orientation"...

Does Nephrotic Syndrome change the way your child feels or does routine activities??

by Uju

Children with nephrotic syndrome

Whether your answer is 'yes', 'no' or 'it depends', researchers would like to understand your child's perspective. There are currently 35 open spots for participants aged 8-17 who have or had active Nephrotic Syndrome within the past six months....

13 years of experience with a sick child

by TGALLO

Support (Pediatric)

Hello Everyone, I wanted to show my support for all of the children and adults with this disease. My son Richard suffered for 13 years as a young boy, into his early teens. His case was chronic, and difficult. In fact, Richard had so many problems, he...

Currently in relapse

by c2charm2002

Real bad relapse

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NephSpace – Nephrotic Syndrome & FSGS Support Group