Claire and Cherry Pie

Where do I go to find out more?

Here are some useful sites, blogs, pages and publications where you can find out a bit more about Dysautonomia, living with dysautonomia, getting diagnosed, treatments and support etc. The dysautonomia community is quite active online because a lot of us can’t get out every day and Facebook and forums can be great places to meet others with the same condition who understand what you’re going through and may be able to offer some support for your journey.

Awesome Blogs about Dysautonomia and living with chronic illness:

Living with Bob – the first Dysautonomia blog I found when I was newly diagnosed, written by the amazing Michelle

The Chronic Ills of Rach – blog by the lovely Rachel on her life with dysautonomia and her journey through diagnosis, treatment and life with a younger family

More than a dash of salt – fabulous food blog full of extra salty recipes for those of us with low Blood Pressure

I need more Spoons – also new to the blogging scene, Ellyn’s fabulous blog is a must-read

Awareness foundations with great information and links:

Dysautonomia International – US based, global organisation covering all types of Dysautonomia.  They have a lot of information on there but although they are an international organisation, a lot of their specific resources are more US relevant.

POTS UK – UK based POTS website – lots of great POTS resources and a very active twitter account

DINET – US based DINET is a great source of information and support – it even has it’s very own forum!  One of the original Dysautonomia pages, DINET pretty well has it all covered.

STARS – Syncope Trust and Reflex Anoxic Seizures, STARS is a UK based group set up to help people with unexplained syncope/blackouts receive the correct help, diagnosis and treatments

DYNAinc – Dysautonomia Youth Network of America incorporated.  US based site for kids with Dysautonomia that is open to kids all over the world.  Greg Page, the original yellow wiggle, is a spokesperson for the group.

There is currently no organisation covering Australia and New Zealand specifically, we’re working on it…
We do however have a Facebook support group for people with Dysautonomia currently living in Australia and New Zealand – Here it is!  Or look up POTS and Dysautonomia, Australia and Surrounds on Facebook.

Publications and Papers:

Heart Rhythm Society 2015 consensus report on the Diagnosis and Treatment of Postural Tachycardia Syndrome, Inappropriate Sinus Tachycardia and Vasovagal Syncope – great paper!

How can I help?

Research is being conducted into Dysautonomia in Australia and the US.  You can help by donating to support the research or even being part of research that is being conducted – trials need healthy participants for controls and participants that have different types of Dysautonomia and fit the criteria for their trials.  I participated in a clinical trial a few years ago and the results of that trial are almost ready to be presented – how exciting is that!

In Australia research is being conducted at The Baker IDI Heart and Diabetes institute by a team headed by Dr Murray Essler and Dr Susan Corcoran – to support their important work, head to the Greg Page fund for Orthostatic Intolerance on the Baker IDI website for details.

In the US, Dysautonomia International conducts and supports research into Dysautonomia.  This page also has a few links to published papers on Dysautonomia to look through

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