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Nephrotic Syndrome with FSGS

Posted by jlight @jlight, Feb 4 11:00am

Hello, I’m looking for any kind of information for my dad. He’s recently been diagnosed with FSGS nephrotic syndrome, and has his appt with Mayo in March. This is all new to us. Looking for anyone familiar. You can only google so much. We want to make sure we are doing everything we can as far as the correct plan of treatment etc. anyone have any stories close to our with kidney conditions? Any info is useful! We feel so lost and would love to just educate ourselves better. Thank you for your time!

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Judy | @jlaprade | Feb 15 6:00pm

Hi,
I just came across your post . I have Nephrotic Syndrome also but a different type, Minimal Change disease.
One of the best websites to look up is NephCure. They are an organization devoted to Nephrotic syndrome and have tons of info about FSGS. You can email them and also, they have monthly zoom meetings where you can connect with others who have the same issue as your Dad. It's very helpful and encouraging to know you're not alone in this journey! Good luck.

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janevir58 | @janevir58 | 9 hours ago

I just saw this as well. Yes, NephCure can be a huge help! Also, I would ask your local kidney specialist if your clinic has a support group for kidney patients. That can be so valuable.
I was diagnosed with FSGS and Nephrotic Syndrome at age 15. I had ups and downs over the years but basically a good life, and finally received a kidney from my sister at Mayo Clinic in March 2007. I hope your dad is doing well and getting the help he needs.

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