Please share your knowledge about use of Kanuma

[Tatyana]

Hi everyone!
My name is Tatyana, I'm from Ukraine. 1.5 years ago my son was diagnosed CESD. Now he is almost six. In our country we were the first diagnosed with this disease, at the moment there are 6 patients in total. 
There are no good specialist in our country. I'm searching everywhere for any additional information about this disease. 
Could anyone tell me about the experience of treatment by Kanuma? What are the results? In what countries is Kanuma used for all patients with CESD?
I'm looking forward to receiving any news.