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

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.

thank you for sharing your experience!! Kudos to you and your children


I was very nervous about breaking the news to my children initially. I think it was partly not to shield them but mostly to prevent panic and fear. Fortunately they were older than your children but I was concerned that they would fear the very worse. My sister also had NMO
She was diagnosed many years before my
What got us through it was not hiding it but also stressing that everyone's experience with NMO can be different. To live one day at a time. Accept help when needed, it's ok to have a bad day but I was never going to unpack my suitcase and live in my bad moments
Lastly I told myself, my children and family NMO diagnosis will NOT define me! It will learn to live with me