Also – linking in with Diabetes groups might be an idea?

I have a friend with diabetes and she found help through Diabetes Australia. It may well be worth having a look at their website.

I’m a diabetic but had never heard of your problem so I googled it! Sounds like you have a rare problem so learn as much as you can about it online. I do hope you get some helpful answers on living with it, I know I have to manage my blood sugars to keep it in check.