Monday, 1 December 2014

Australian and New Zealand Dysautonomia community resources.


I am waaaaay behind in replying to emails. Time flies by and I lose days to this very inconvenient and uncooperative disorder. And the emails pile up way beyond my ability to catch up. So thought I'd do a short post regarding the three main questions I get asked.


Question 1

Number one comes from contact with Australia and New Zealand patients looking for a place to start, and doctors to see. I don't keep a list of doctors on hand and am reluctant to recommend any one in particular as one person's godsend can be another persons a'hole. But there is a place to go.

If you are from Australia or New Zealand there is a combined Facebook group which has files relating to everything from local doctors to local blogs. It's a thriving group with nearly 5OO members and is a fabulous supportive community. There are periodic catch ups in both countries and heaps of local information relating to things from Special Access medication procedures to applying for various welfare programs and mobility aides. It is a closed group so only other members can see posts and is for Australian and New Zealand residents ONLY.

The group can be found HERE


Question 2

Number two I am also asked if there is any local research. And luckily the answer is YES and they are often recruiting.

The Baker IDI Heart and Diabetes Institute has a lab where Dysautonomia research is undertaken, from drug trials (eg Droxidopa) to underlying mechanisms. A number of the doctors undertaking research also run clinical practices and see patients.


Question 3

Number three is there a local Dysautonomia charity. Again the answer is yes.

There is The Greg Page Fund For Orthostatic Intolerance, which raises funds for a range of research. It is also the fund for which I have been raising money for the last year. As you may recall Greg Page was the Yellow Wiggle and had to stop wiggling thanks to the development of Orthostatic Intolerance.


But wait there's more

2013 I dedicated Dysautonomia Awareness Month to Australian and New Zealand stories. It was great opportunity from patients and their family members from both sides of the pond to share their stories. So whether you're from Australia or New Zealand I'm sure you'll relate to the stories told

A roundup of all the submissions can be found here.


So there you go until I can get on top of my email nightmare I hope that helps a little. There is a small but growing patient community in both countries and lots of support to be found on the Facebook group.

Michelle

The musical accompaniment had to come in the form of the Australian New Zealand powerhouse that was Crowded House. Love belting out this song



I am on the last week of my year long fundraising so still time to share or donate.

You can head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $4,300, keep donating and hopefully we can reach $10,000 (ends Dec 9th 2014).

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx