NephSpace – Nephrotic Syndrome & FSGS Support Group

The NephSpace Support Community connects patients, families, friends and caregivers for support and inspiration...
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carletta22's picture
by carletta22
New reply 5:13 pm
2 replies
My daughter was recently diagnosed with nephrotic syndrome. she is 3 1/2 . she is not responding to the steroids and they will tell me what the plan is on Monday. I feel as though I am lost and I don't know what to do half of the time. Is their any...
uppercourt's picture
by uppercourt
New reply 4:46 pm
9 replies
My daughter, who turned 7 today, has had frequently relapsing MCD for 4 years. It's time to try to stay off steroids and to move to our next treatment option, Rituxan. After researching statistical data amongst all the medication options I had to choose...
dee's picture
by dee
New reply 12:53 pm
1 replies
I have not blogged for awhile. My apologies. I am 52 and diagnosed with MCD on October 10,2014 I was not much in the mood to conversate with anyone as I got progressively worse. I even ended up in the hospital twice. This however was a Godsend as this...
storaloppan's picture
by storaloppan
New reply 10:04 pm
5 replies
I wore a pair of thigh-high compression stockings today, and I'm amazed at what a difference they made. They make it SO much easier to walk, and the "uncomfortableness" in my ankles was nearly unnoticeable. Unfortunately, every time I wear these...
amanda0125's picture
by amanda0125
New reply 6:20 pm
6 replies
I was wondering if anyone had any lucky on getting their insurance to cover Rituxan? I have steroid dependent FSGS and relapse whenever taken off prednisone. I was recently denied coverage for rituxan and after 3 yrs of relapsing I have tried every other...
Marimejia.21's picture
by Marimejia.21
Thank yo everyone. Thank you nephcure. After the San Jose nephcure walk. I met other patients who also have FSGS. One of them talked about remission and how he had been living with FSGS for I've 15 yrs. he truly inspired me. With just looking at him you...
serenityseeking's picture
by serenityseeking
New reply 11:57 pm
2 replies
In the ongoing pursuit of discovering the etiology of Acacia's Collapsing FSGS, we submitted blood for secondary genetic testing, and discovered that she has malformations on both alleles of her APOL1 gene. This is a rare occurrence and only occurs in...
l_bentley's picture
by l_bentley
New reply 6:05 am
3 replies

It was my first summer being away from home at sleep-away camp. As I got dressed to play capture the flag, I realized my sneakers would not fit on my feet. In fact, my entire leg was swollen. The medical center believed salty camp food and running...

Dennis's picture
by Dennis
New reply 11:11 am
14 replies
As a Nephspace Community Builder, we like to reach out and cover a variety of topics to help understand Nephrotic Syndrome better, by sharing personal experiences and sometime professional advice. Sometimes we may miss a topic that you want covered....
Marimejia.21's picture
by Marimejia.21
New reply 12:08 am
4 replies
My family and friends don't really understand. How can they if I don't understand. Sometimes I cry at night thinking that I'm going to get real sick, sooner than I can expect. I tell my husband. I don't want to be sick. And he responds with YOUR NOT SICK...
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