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Author Topic: FSGS Info for RichardMEL and others  (Read 2070 times)
noahvale
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« on: August 11, 2010, 09:20:28 PM »
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« Last Edit: September 16, 2015, 02:20:03 AM by noahvale » Logged
Deanne
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« Reply #1 on: August 12, 2010, 07:23:52 AM »
I think this is the study my family participated in! I didn't know there was a website for it. Thanks for sharing it!
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
RichardMEL
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« Reply #2 on: August 12, 2010, 09:38:49 PM »
oooh. that is very interesting. Thank you! I hope they can find the genes responsible and somehow find some kind of therapy or way to prevent this occuring in the future - that would be great!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
noahvale
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« Reply #3 on: August 13, 2010, 07:00:50 PM »
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« Last Edit: September 16, 2015, 02:19:35 AM by noahvale » Logged
noahvale
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« Reply #4 on: August 13, 2010, 07:01:58 PM »
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« Last Edit: September 16, 2015, 02:19:12 AM by noahvale » Logged
Sluff
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« Reply #5 on: August 14, 2010, 08:05:12 AM »
Might be some hope for us FSGS ers. 
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Deanne
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« Reply #6 on: August 16, 2010, 12:50:39 PM »
Our participation was just a blood test. We were asked to participate after my nephew was diagnosed with FSGS (my diagnosis, too), showing a likely genetic link. They sent a kit, we had our blood drawn into the vials they provided and sent it back. That was a couple of years ago. From the website, it sounds like the study is still ongoing. I was wondering why I hadn't heard anything back from them because I thought they said they'd email the results. I guess we hadn't heard back yet because there's nothing to hear.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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