@girlbeforemirror,

I am scared.

I'm not scared of diagnosis or treatment interventions or even pain. I'm scared of investing hope and not finding any help for my condition.

Geese ... I'm scared for you.

I looked up EDS and spent a couple of hours reading. There don't seem to be many specialists in this field. More in the US than in Australia. Would there be any point in looking for specialists in the US? I'm sure you would have researched this at length.

I'm not sure what Australia's healthcare system covers respecting foreign treatment, but if money becomes an issue, we could organize a Steemit fund-raising campaign. It's been done before.

Quill.