The NephSpace Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
The lack of awareness within the medical field
- By 1955-53 · New reply 4:51 pm
- Journal · 2 replies
- I have been going through such a nightmare that is way too familiar for everyone that has neurological diseases and I'm fighting mad. I have stiff person syndrome and no one in the medical field know ...
aggressive behaviour
- By msm · New reply 3:42 pm
- Discussion in Children with nephrotic syndrome · 8 replies
- Dear all, My son last week was suffering with swelling. doctor told due to loss of protien, he is suffering from Nephrotic syndrome. he confirmed by urine and blood test. Now he has given 20 mg morning ...
Ventricular Tachycardia
- By MelissaShuford · New reply 1:47 pm
- Journal · 7 replies
- Is there anyone that could share their experiences with V-tach with me ~~~~signs and treatments~~~~what led to a diagnosis~~~~just any input!!! Thanks and God Bless, Melissa ...
a difficult day
- By AngelJoshua1213 · New reply 1:22 pm
- Journal · 17 replies
- Today my little Joshua would have been 2 years old. For the past 2 weeks I've been dreading this day coming and this morning at 4am I broke. I've been a crying basketcase ever since. I am having such ...
HSP & Kidneys - What to expect next?
- By Bubby6 · Posted 12:16 pm
- Discussion in Children with nephrotic syndrome · 0 replies
- So we are finally starting to see improvement since this disease began in October. We initially had the aweful rash, horrible stomach pains, nose-bleeds and arthritis in all major joints. Best estimate ...
GFR question - FSGS
- By mamagemini · Posted 11:51 am
- Journal · 0 replies
- Last blood tests my gfr was 37...I just took another one in Feb and my GFR is 48. Does that mean I'm going into remission? I still see alot of bubbles in my urine so I know I'm still in Stage 3...but ...
How Stiff Person Syndrome Has Changed My Life
- By 1955-53 · New reply 11:40 am
- Journal · 66 replies
- I was finally diagnosed after 5 years searching desperately for an answer. In May, 2009, I finally got the diagnosis. Then I started falling, broke my wrist in July and the Sunday after Thanksgiving I ...
GLUTEN FREE
- By lookonthebrightside · New reply 11:01 am
- Discussion in Adults with FSGS · 9 replies
- So I havent posted anything in a while. but today is my second day being FULLY gluten free. Took a lot of will power but im finally doing it 100 percent! Im hoping i stick with it for a while and it greatly ...
NEPHCURE LOS ANGELES LAUNCH! -- JOIN US THIS SATURDAY
- By Sarretta · Posted 10:29 am
- Discussion in Fundraising and awareness · 0 replies
- Please come join us for the launch of NephCure Los Angeles on Saturday, March 20th: Gibson Dunn 333 S. Grand Ave, Ste. 4700 Los Angeles, CA 90071 Please RSVP to clepone@nephcure.org ...
Gluten Free Diet & FSGS
- By DennisD · New reply 10:28 am
- Discussion in Adults with FSGS · 31 replies
- I have heard very promising stories of remission under a GF diet, and also stories of no effect. If any of you have given this a try for at least a couple of months, appreciate a quick post saying Yea ...
Plasmapheresis, FSGS and taste buds.
- By MassMark · New reply 7:27 am
- Discussion in Adults with FSGS · 7 replies
- I just joined yesterday and read many of your past discussions. Having the ability to discuss issues and experiences is a great thing. FSGS is a nasty thing. My wife was confirmed to have it via a biopsy ...
Membranous Nephropathy are my results
- By Alfonso123 · New reply yesterday at 7:23 pm
- Discussion in Adults with nephrotic syndrome · 19 replies
- I got the results of my biopsy, the Neph says membranous nephropathy, but the report says membranous glomerulopathy?? Looks like I have less than 10% scaring. I was told about 1/3 of cases go into remission ...
I am truly sorry.....Lord Please Embrace Me !!!!
- By MelissaShuford · New reply yesterday at 5:47 pm
- Journal · 12 replies
- I know I have not been very supportive for anyone lately and I am truly sorry but I absolutely feel like crap~no nice way to put it~I don't understand why some days are so much worse than others~its like ...
FSGS and natural medicine
- By al19ly · New reply yesterday at 3:52 pm
- Discussion in Adults with FSGS · 8 replies
- I have not been happy with my nephrologist because I feel that all she does is write prescriptions without trying to get to the root cause. This has caused me to switch to a homeopathic doctor that practices ...
Support your group and raise awareness with badges
- By Walter · New reply yesterday at 2:50 pm
- Journal · 56 replies
- Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...
World Rare Disease Day
- By Brian · New reply yesterday at 12:57 pm
- Journal · 17 replies
- In recognition of Rare Disease Day 2010, Inspire and the National Organization for Rare Disorders conducted a survey of Inspire members with rare disorders. The results are enlightening, and I encourage ...
NephCure in San Diego
- By CatherineL · Posted yesterday at 12:34 pm
- Discussion in Fundraising and awareness · 0 replies
- We are having our NephCure San Diego Kick Off meeting on Sunday, March 21 at 2:30 p.m. Starbucks at La Jolla Village Square. Please rsvp to clepone@nephcure.org All are welcome ...
Coming out of the tornado
- By 1955-53 · New reply yesterday at 11:24 am
- Journal · 1 reply
- Getting back to being able to actually have a conversation and move better. All your kindness and messages of encouragement are such a blessing I can't even find the words to thank you enough. Give me ...
Diovan used to lower protein
- By thewatcher101 · Posted yesterday at 2:09 am
- Discussion in Adults with FSGS · 0 replies
- My doc called since - two months of lab show my protein to creatine ratio of .53 still not .4-0 range he has upped my Diovan from 160 once daily to twice daily. I was wondering why he did that and found ...
NIH clinical trials
- By zachattack · Posted March 15, 2010
- Discussion in Adults with FSGS · 0 replies
- Has anyone been involved in clinical trials at the NIH? Anything good or bad ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
Events and resources
- What are the kidneys and what do they do?
- What is Focal Segmental Glomerulosclerosis?
- What is Nephrotic Syndrome?
- What is Minimal Change Disease?
- Tell me more about FSGS/NS research!
- Free lunch and opportunity to learn more about FSGS/NS
- Sign up to receive the latest information related to FSGS/NS
- Become a fan of NephCure on Facebook
NephCure on Twitter 
Group leaders
Discussion topics
You
About this group
The NephSpace Support Community connects patients, families, friends and caregivers for support and inspiration. The NephSpace Support Community is sponsored by The NephCure Foundation in partnership with Inspire.
About · Explore groups · Directory · Community guidelines · Our principles · Privacy · Terms of use · Start a group · Help · Feedback · Follow us on: 
Copyright © 2005-2010 Inspire · All rights reserved