My name is Shannon and I am a Mom of 3. My daughter who will turn 12 this month was diagnosed with C3GN in January of 2015 at the age of 8. She had went in for testing to find out why she had blood and protein on her urine dips which led to the diagnosis. She was the first case at our local Children's hospital. I was so lost and felt like I couldn't find any information out there on what we were dealing with. I started a Facebook group (C3G Warriors) with the hope to find others for support and to talk through what was going on.
I am so excited for this new site to be up and running so that patients and families can find the information and support they so desperately need when diagnosed with C3G.
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saliff
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Hi Shannon! I am also excited for this community and all it will bring to our families. I'm so glad we stumbled across each other and have had each other to lean on these last few years. Hopefully other newly diagnosed families will be able to find those kind of friendships here!
Hi Shannon, thank you for your great post. Your feelings of being lost and isolated at the time of your daughter's diagnosis are so common- I am sure you will be able to help the new parents and patients who come to the site with the same feelings. We are fortunate to have you as an ambassador!
Hello Shannon, hope you and everyone are keeping well. I'm really looking forward and hoping that we can make this site very informative for all our families. x
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Hi my name is Scott