What was your journey to getting a diagnosis like?

Long, very long in fact way too long!!
 

What is your biggest struggle with Dysautonomia?

Coming to terms with the silliest and smallest things it impacts on and/or robs us of being able to do “normally”, like say making a tea or coffee or even being able to show respect by standing when the judge enters the court room to hear one’s disability appeal.

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Is there a Dysautonomia success story you would like to share?

I learned to stand again which is my way of saying I learned to live with it so that I have it and it no longer has me..
 

What are your top three treatments that help you function daily?
1. Always prepare to move (i.e. change orthostatic position)
2. Always move slowly and support yourself along the way
3. Remember not to stand still (even if just shifting weight from one leg to the other)

 

Who has inspired you on your journey?

My niece Tracy was a large part of what inspired me because by the time I was starting to lose the battle to get diagnosed with EDS and POTS, her need for answers as well gave me the lift I needed to complete the journey. One thing I have learned from all of this is that nothing helps one more than helping others, and that is why having such a large mostly on-line family who share these conditions has also helped inspire me too.
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What advice would you give to a newly diagnosed patient?
Knowledge is power. Learn how your body works and how you can learn to make that work for you rather than against you. Also remember there is strength in numbers so join in groups both to be helped by others, but importantly also so that you can share your own strengths with others, because this is a journey you need never - and I would say should never - have to make alone. It’s a very long and lonely road without friends that truly understand.

 

​Misc Quote:

"OK so not that rare with medical terms but before I begin I can’t help but note my sort of annoyance that I had to add Dysautonomia to the dictionary for Word given many other less important and even more obscure words that don’t need to be “taught” to the application."