Dear friends,
It is sad to report that a four-year-old CAH boy has recently passed away in our Japanese CAH community. He had an acute illness, started with sever vomiting during night. By the next morning, he lost consciousness and three weeks later, he died.

In Japan, having Solu-Cortef shot is not commonly practiced among CAH patients. In this boy’s case, his doctors said that a virus spread so quickly that nothing could do. In other words, they suggested that his death was not directly connected with adrenal crisis. However, reading his mother’s story, I cannot help thinking what if his parents had had Solu-Cortef and could have given him a shot at the onset of the illness? There might have been a hope.

I myself live in the US and my CAH son was diagnosed and has received treatment here. To me, it was shocking to learn that in Japan, having Solu-Cortef is not a regular practice. This boy’s death really struck me that I have to do something to change this situation. What I want to do first is to write briefly for my Japanese friends why CAH patients need Solu-Cortef, since many of them don’t even know about shots.

Other thing I want to do – and need your help in that matter – is to tell them a few personal stories. When and how did you decide to use shots, and how did they help? How did the shots improve condition of your children or yourself? My husband and I have not used a shot yet to our CAH son, so we cannot tell them how life-saving these shots really were from experience. I would truly appreciate if some of you could share your stories.

You can send messages directly to me – my address is ontasu@umich.edu. Thanks so much for your help!!!
Natsu