New Look for 2015, Looking for Guest Posters!

Hey all,

I was thinking about sprucing up this little blog and related social media for 2015, Perhaps a new look, guest posts, any suggestions welcome of what you would like to see featured, please let me know here or at :

As always, if anyone wants to write a post, draw a picture, do a presentation, a video, whatever you please on any aspect of Dysautonomia and it’s related issues, please just get in touch I would be delighted to post it here on the blog πŸ™‚

Thank you all πŸ™‚

4 thoughts on “New Look for 2015, Looking for Guest Posters!

  1. Just want to remind the readers that POTS isn’t the ONLY Dysautonomia that exists.
    There are over 30 types…
    Not all of us identify with POTS folk, esp since many young people get it due to growth spurts, rapid weight gain etc and once their nervos system catches up and becomes accustomed to the body’s new size, the symptoms Orth csn and do dissipate.
    Others, like me, have onset of this disease later on – in our 40s – and no cause can be determined. We are the ones that suffer from being ignored by docs b/c they can’t figure us out. We often have genetic issues that make it unable for us to take ANY medications, whereas POTSIES csn take midodrine, Florinef or salt tabs and improve their sx, whilst people like me can’t even take the meds.
    We are the forgetten, the ignored, the true blue zebras that cannot find any doc anywhere in the world willing to explore symptom management – all b/c we are not simple POTS cases.
    We get accused if being illegal drug addicts b/c no explanation can be found for our sx, and often we resort to being treated symptomatically, without the root cause ever being looked into in depth.
    I WISH all I had was POTS, so the happy dictors can check off all their diagnostic boxes and give me a simple pill.
    I get treated horribly and disrespectfully by NOT getting treated by doctors- they simply brush me off and tell me that what I have isn’t something they can treat.
    So I suffer and not one doc gives a damn.
    And I live in the US – in the middle of a city full of major medical research.
    But, if your symotoms don’t ket the docs ck off the boxes in their books, you don’t qualify for research either.
    How about a blog focusing on those if us with Dysautonomic contains that AREN’T POTS???

    • Hi Lori, this blog concentrates on more than just Pots, I talk about EDS, NCS and vascular issues too. I mainly speak of my own experiences because I have noone else helping me with this blog and my main issues are EDS and Pots. (hence this post looking for people to post on here!) I would be glad if you were willing to write something I could feature, if you feel this blog needs a bit of diversity, please give it πŸ™‚ πŸ™‚ Id be delighted to feature it πŸ™‚

      • YES!! I’d be willing to write a post on my experience with my dysautonomia. Since 90% of the docs I have seen don’t even know what dysautonomia is (or Autonomic Dysfunction as we call it here in the US) – I am 100% psyched to contribute to raise awareness!!! Thanks for the offer. Please contact me via email with your contact info so I can have you proof/edit my post! πŸ™‚

  2. Pingback: Great News! An Interview With Dr. Mustafa Ahmed, I Need Your Questions! | Irish Dysautonomia Awareness

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