Kidney Patient Guide

Hi
Just wondered if everyone who has fsgs could post a message with there age sex and location on as i just wanna get a rough idea of who it occurs in plz
take care
love laura~~~~~

I am 34, female, and live in NYC...I was diagnosed with interstital nephritis about eight years ago...and that first biopsy was inconclusive about the comorbid diagnosis of FSGS as well...one doctor who looked at the slides thought I might have it....a repeat biopsy a year ago after reduced function showed that I do have FSGS on top of the intertital nephritis...so I guess it's secondary FSGS...we can never be sure...I am also Caucasian with no other family member that I know of with any kidney problems...in research i've found it is often genetic and in African Americans...neither of which fits me

Hey
Thnx very much
laura~r~

Hi Laura,

I'm male, 32 and I was originally (incorrectly) diagnosed with FJHN about 12 or so years ago.

My clearance is 16 so I'm just about to go on the transplant list in the next month or so and expect to be on dialysis within 6 months (unless i am very lucky and get a transplant before then). virtually my whole family have renal disorders strangely all different ones!! My Brother has had 2 transplants but has now been on dialysis for 13 years and my Dad & sister have FJHN.

I have primarily FSGS and the problem with this is that it can (but not always) reoccur in the transplanted kidney.

good luck

Mike

Sorry to sound like I'm being thick - but what are FSGS and FJHN? I see them written often on this website (especially FSGS) and I'm sure I'm not the only one out there who has no idea what they are.
As for me, I have interstitial fibrosis (not interstitial nephritis), and cannot find any information anywhere regarding this. If anyone can provide me with any I'd be grateful.
Thanks
Ruth

Hi,

FSGS is focal segmental glomerular sclerosis, see :- http://www.nlm.nih.gov/medlineplus/ency ... 000478.htm

FJHN is Familial Juvenile Hyperuricemic Nephropathy or somtimes called Familial Juvenile Gouty Nephropathy see :-
http://www.questdiagnostics.com/kbase/nord/nord1108.htm

FSGS is fairly common but FJHN is very rare and it is estimated that there are only 40 families worldwide with the disease.

hope this helps

mike

also this is all I could find from google about Interstitial Fibrosis:

http://tpis.upmc.edu/tpis/kidney/KChrIFTA.html (makes no sense to me!)

Hiya Laura as u know Rach is 16 was diagnosed aged 21/2 with F.S.G.S. n/syndrome -steroid resistant

She was on p/d 18mnths now been on haemo bout 4 wks but is doing better on haemo thankgoodness. Life has been full of ups n downs such emotional rollercoaster- but hoping see light @ end of long long tunnel soon

I know u had a tough time and hope that things will improve for you too soon. Nice 2 speak 2 u Laura and that u have found this site which is very useful and supportive.

best wishes Elaine & Rach uk

Took a look at the Yahoo link - made no sense to me either. Thanks for trying - that's more than I've ever found on the web (seems to be lots of sites with interstitial fibrosis in cats/dogs but not in humans - bizarre!)

Hi Laura,

I am 32 (female) who was diagnosed with FSGS at age 26. Did not do dialysis, as my husband was a match and I had a transplant Feb 2003. I live in VA. Don't know why I have FSGS (idiopathic cause?) No one else in my family has kidney problems.

jen

Hi Laura
My son Robin aged 14 was diagnosed 12 months ago with FSGS, we live in the Cotswolds, use Bristol renal unit and he is well at moment, cyclosporin has brought down the protein loss from nephrotic range but still no remission yet.
(Daughter aged 12 also diagnosed 2 yrs ago with a kidney disease)
We are having about 20 family members tested for genetic research into FSGS through Duke Univ in US
regards
BrendaM

Hello Brenda nice to read u post Have sent u a private message
we also attend same unit as you.

Be nice to hear from u soon

Greetings all, was diagnosed at age 63 with fsgs. At that time they told me it was rare, but after checking on web i found out alot more about this disease. Am at 30 pct kidney function right now, which isnt too bad after reading some of the posts her and couple more sights. Any input will be helpful. I live in Iowa, U.S.A. Jake

I do not have FSGS but the following site from Duke University seems
easier to understand:

http://www.chg.duke.edu/patients/fsgs.html

34 yr old Af/American female in Philadelphia, Pa. Was diagnosed in 2001 at age 31 with FSGS due to reflux and genetics (on my dad's side). Been on PD since 2002. On "status7" for transplant (I think that's the number). Basically it means that I've had an evaluation, bloodwork was fine, etc. and I need to take care of some things before actually getting listed (like losing weight).