Victoria C.

Adult, FSGS

I was diagnosed with FSGS after giving birth to my second child. My doctors told me that my GFR was at 45% and that there was no cure. I remember feeling like my life was over. At that point, I didn’t think of my kids, my husband or anyone, I just thought about me being sick and dying. I started getting very depressed. I didn’t want to talk to anyone or even be around my kids. I felt useless, that I was just a sick person getting in my family’s way.

One day I decided that I was going to give up. By not taking my pills or taking care of myself, maybe I could speed things up and release my family from me. As the days passed by, my oldest son (he’s 9) came up to me and said, “Mom, don’t be sad, we can fight this together. I will be that rock that you can lean on.” When he said that, I broke down into tears and said, “You’re right!”

I started looking for help. I went to see a therapist to understand myself and, most importantly, to accept that I was sick — but that it was okay and I was going to be just fine. I also found a group on Facebook! They have been nothing but supportive and I don’t feel alone. My husband and family became more involved because I allowed them to. I open up to them so they can help. Now I’m going to my appointments and watching my diet. So far, my GFR has gone up 5 percent. Let’s hope we could find a cure!

I have one piece of advice: never think you’re alone, even when it feels like you are.

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