Hi all,
Earlier in the year my daughter was diagnosed with MOGAD (myelin Ogliodendrocyte glycoprotein antibody disease). She initially presented with optic neuritis and then went on to have some seizures. She is now stable on prednisolone and we are currently upping her azathioprine dosage in the hope we can reduce (and eventually eliminate) the steroids.
It’s been quite a journey and we are yet to meet, or hear of any one else who has even heard of this disease, let alone a child who has it. I don’t anticipate hearing from anyone, but on the small chance there is someone out there that would like to chat all things MOG, I am here 🙂