Friday, 24 June 2011

Dysautonomia Australia: Get Excited People.

Exciting news here in Australia for all Dysautonomia patients.  There will soon be a website dedicated to raising awareness and providing local information on Dysautonomia.  Content will include information on everything from the latest research, to finding local doctors, and navigating our disability system.  The website will also provide content for our cousins across the pond in New Zealand.

I am proud to be part of a group of amazing women who are working together to build this website.

The website is currently under construction, but we are hoping to have a basic site up and running within the next month.  With the site continuing to develop over the next few months.

Stay tuned for more updates here on the blog, FB and Twitter.

In the meantime you can access our FB support group, POTS & Dysautonomia Australia (and surrounds) here.  Or read about our last get together here.


Time to raise the roof, or at least some awareness, locally.

Cheers
Michelle :)

2 comments:

  1. I live with bob, too. I loved your humour and will be reading more of your blog. I try not to get scared off because I'm 56 and for some reason I just feel too old to still be trying to deal with this and not doing a good job of 'dealing.' That's a lot of shame, I'm feeling. I just realized. Or re-realized, more like. Thanks for your take on it.

    Although POTS is a shit thing to have to live with I can't take any more 'forums' that make me feel like I'm a failure because I just don't want to spend every waking minute trying to work out why my body is doing what it is doing.

    I like my 'good time' to be filled with doing good things. I'm just not up to using those precious times researching this illness, anymore. I leave that to the doctors and accept, for now, that I'll just struggle through the bad times.

    Again, thanks for the black humour. I love it. At my best I can talk with my black humour with my best sister and my psychiatrist -- but that's the sum total of people of people in my life who get it enough for me to be able to be real about it with. And here you are, writing to a whole lot of people and able to do it so well and real.

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  2. HI BOB ET ALL,


    I recently had a tilt test and was diagnosed with central dysautonomia. I have suffered at various times with seizures (myclonic involuntary jerking of the whole body), usually brought on by any new drugs that I take. E.G. recently had surgery and went into seizures for 5 days, most likely due to anaesthesia drugs.

    I also suffer with blurred double vision, vertigo, blood pressure fluctuations and fainting. I seem to be allergic to plasters and band aids and drugs such as tramadol, penicillin and sulphur.

    COULD YOU PLEASE ADVISE OF ANY DOCTORS OR SPECIALISTS IN THE SYDNEY AREA THAT HAVE KNOWLEDGE OF DYSAUTONOMIA.

    Babs

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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