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To the parents- how did you explain NMO to your children?

As someone with no children, i'm wondering how all the parents here explained NMO to your children. We know NMO is hard to explain to doctors. So how have you broken down things to your little ones? Please share your experiences and any tips you may have! 💚
- Jada

  1. This is a tough one. When my kids were younger I did try to shield them from the severity of this disease. They helped me with chores more than their friends as a part of being in the family, not really realizing how much I needed their help. Now they are older and they can see and appreciate my limitations. They know that I need rest and help with the household chores, but I have tried to keep their lives as normal as possible. But as a result, they can cook, do laundry, clean some of the house, decorate for holidays,etc. some life skills their peers may not have yet. I have not discussed the prognosis of this disease with them yet. As I have had TM with brain stem involvement a few times since the COVID pandemic, I am thinking that I need to prepare them but I really don’t know how to do that either. Take my approach for what it was. I’m 51 now with kids aged, 20, 18 and 15. They were 7,5 and 2 when I was diagnosed. So I have been able to see more of their lives than predicted back then, for that I am grateful. I was able to give them fairly normal childhoods. I am happy for that. It’s a huge burden to bear, and I am glad they didn’t need to bear it yet.

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