The Importance of Dysautonomia Awareness Month

I’ve recently done a few threads on twitter about Dysautonomia Awareness Month and the importance on it and wanted to expand more on a blog post.

Dysautonomia Awareness is crucial in not only the medical profession, but crucial for the public to know about too. If I had any idea of what dysautonomia was before diagnosis, I may have gotten there quicker. The same for EDS.

I went 5/6 years without a diagnosis, and what is funny about my experience is I had visited various consultants who should have known years prior to my diagnosis what was actually wrong, yet they didn’t have the knowledge.

At age 15 I saw multiple specialists about my joint problems, and their solution was an operation. If those consultants would have known about hEDS and had knowledge on the condition, I wouldn’t have had an operation that caused more harm than good, and I would have had help or assistance in the years I went without diagnosis after seeing this consultant.

I also saw consultants about my symptoms (now know to be PoTs a form of dysautonomia) thinking I had a hole in my heart, I had scans, tests, etc and nobody once said ‘this sounds like Dysautonomia’. My heart specialist I am under at my local hospital had never heard of Pots before I got sent to him, and he has studied the heart and problems associated with the heart for years. He dismissed me and stated he simply did not know what to do with me as he’s never studied PoTs or Dysautonomia. Yet, most PoTs patients are under a Cardiologist, so how many of us get told the same?

Looking back, the signs and symptoms were overwhelmingly obvious from the beginning.
They were there, right infront of not only me, but my doctors AND specialists and it took until late 2015 for a consultant to finally say ‘have you ever heard of PoTs?’. Why did it take so long? Why did multiple consultants miss what was right infront of them? This isn’t a rare illness, it is very common.

My opinions on the lack of knowledge within the medical community is as follows:
A) They have lack of funding
B) It isn’t discussed as frequently as other common illnesses
C) PoTs (a form of Dysuatonomia) is a fairly ‘new’ illness within the medical community (Only being properly classified as PoTs in 1993)

Unlike most conditions where you see a specialist and they know what to do and how to do it, Dysautonomia is difficult for one person to treat. Many patients come across Rheumatologists and Cardiologists time and time again who say to them they simply don’t know what to do, or have to seek extra help.

In 2017 there shouldn’t be such a lack of understanding in the medical community.

We need to spread awareness about Dysautonomia and it is crucial that we get the help we so desperately deserve.

1 in 100 teenagers are diagnosed with PoTs, and with such a lack of understanding (especially in the UK) people are being left to deteriorate and being told to just ‘deal’ with the symptoms. When the average age of diagnosis is 20, nobody wants to be told that. I want help, and i want to be able to get my life back on track and go back to University. Yet because of lack of funding/understanding, I’m stuck.

Please read more about Dysautonomia at http://www.dysautonomiainternational.org/
I’ve only mentioned one form of Dysautonomia in my post, PoTs, which is what I suffer with, but there are other forms to look at online.

Jess

 

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