On February 10th of 2021, I was diagnosed with a chronic illness called Dysautonomia. After 4 1/2 years of frequent doctors appointments, tests, scans, different specialists, false diagnoses and new medication-- I finally have an answer. I am so relieved to share my diagnosis of Dysautonomia, specifically Nuerocardiogenic Syncope. Now you may be wondering-- what does that mean? And that is a question that I am still trying to figure out myself. But here is what I do know...
1) Dysautonomia is a group of disorders characterized by the failure of the Autonomic Nervous System. Examples of disorders under Dysautonomia include POTS, Orthostatic Intolerance, Nuerally Mediated Hypotension, and Nuerocardiogenic Syncope.
2) The Autonomic Nervous System controls bodily functions that you don't think of such as breathing, blood circulation and digestion.
3) Dysautonomia can impact the whole body by impairing functions of the brain, mouth, eyes, skin, heart, blood vessels, immune cells, bladder, stomach, intestines and the gallbladder
4) Common symptoms of Dysautonomia include but are not limited too fatigue, brain fog, fainting, lightheadedness, sensitivity to light, chest pain, heart palpitations, hypotension (low blood pressure), hypertension (high blood pressure), stomach pain, nausea, increased allergies, etc.
5) Nuerocardiogenic syncope is a loss of consciousness (syncope) that affects the brain (neuro) and the heart (cardio).
6) There is no cure for Dysautonomia (yet!) and there are not many medications that effectively treat Nuerocardiogenic Syncope.
Dysautonomia is not a rare disease by any means. In fact, over 70 million people worldwide are diagnosed with a form of dysautonomia. For it affecting as many people as it does you think it would be more commonly known disorder-- but it is not. Even after 4 1/2 years of research, various doctors, medications, etc., I just heard about Dysautonomia a few months ago. This is actually common. According to Dysautonomia International, it takes the average Dysautonomia patient 4-6 years to get diagnosed. Since my diagnosis last week those around me have been asking me the same question-- "why didn't you find out sooner?" There are a lot of explanations-- misdiagnoses, misleading doctors appointments, inconclusive lab results-- but the answer to this FAQ can be boiled down simply to one word: awareness.
Awareness put simply is a knowledge of something. Being aware of Dysautonomia is as simple as a quick internet search (I recommend dysautonomiainternational.org) Awareness can lead to understanding when you become educated on the subject (even if it's just some basic knowledge) and engage in the experience of someone who has experienced the subject. This can really be as simple as listening. And if you read this far-- congrats, you just gained some understanding you may not have had before by learning about Dysautonmia and my experience with it. My goal with this blog is to not to raise Dysautonomia awareness, but rather to raise Dysautonomia understanding. Understanding leads to empathy and empathy leads to closer connections with those in our lives.
Here's to learning and growing in empathy,
Sabrina
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