Dysautonomia Awareness Month

I actually debated about talking about this. I actually almost never really talk about this unless I have to talk about it. I have lived with this my whole life and my extended family really has only recently become aware of it (I told you I don't talk about it). It was something that I could easily brush off to being no big deal. It was just something I learned to deal with and really was more of an annoyance rather than something that affected me to the point I had to be hospitalized. Granted it has affected me in a greater way now, but I still feel that I have been very lucky compared to some. 

My reason for talking about it now is that I've talked to people who have the same diagnosis and I saw that a few of them have problems that affect them in a great way. Some have been hospitalized or have had to find ways to accommodate their disability. One of the biggest problems are people around them that don't understand or even doctors who are not aware of these problems. Heard of the woman who was shamed for using a handicapped space where someone sent them a note on their car? At least one of those cases was a dysautonomia patient. So, I thought I'd shed some light on it and if you know someone who has a form of this (or yourself) you can find out how to be more educated. I'm just going over the fine points.

What is dysautonomia?

According to Dysautonomia International it is:

From Dysautonomia International. Click to enlarge.

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. 

Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time, but Dysautonomia International is funding research to develop better treatments, and hopefully someday a cure for each form of dysautonomia. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.

My form is called POTS (Postural Orthostatic Tachycardia Syndrome). It is (according to Dysautonomia International:

[It is] estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,00,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure. 

I was diagnosed a million years ago before it was referenced as POTS. In fact POTS has only been recently coined and my pediatrician called it something else which I don't remember (it has recently been reaffirmed as POTS so I know it was the same thing by talking to my docs) but I did know it was a form of dysautonomia. I do remember him saying that as long as I don't faint then don't worry about it. He should have been more specific since I didn't realize at the time that near fainting (near syncope) should have also been seen. *giggle snort* I have had a few of those and know how to avoid fainting so far (I recognize the signs early and haven't had an episode in quite a while). Listing few symptoms I get often have been tachycardia, shortness of breath, dizziness, temperature sensitivity, shaking, sudden weakness, blood pressure anomalies and exercise intolerance and I'm sure a few more I forget to mention. 

From The Mighty: 21 People Describe what POTS Feels Like

This is such a good general video on dysautonomia



Here are some more links to find out more:

Dysautonomia International
Dysautonomia International Facebook Page
10 Facts about POTS
Donate to Dysautonomia International (for education, research, and medical training)

I hope this sheds some light on dysautonomia and POTS in general. I just wanted to introduce this syndrome to those that don't know about it at all and gain more knowledge about this disorder. It is one of those problems that isn't easily seen and has a wide variation of how it affects a person. If you know someone who has it, you suspect it, or if you know a doctor who needs educating, the links above are great resources to find out about the various forms of dysautonomia. Thanks for reading!