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Dysautonomia Awareness Month

Sometimes, the hardest part about being sick the way that I am is that on most days, I don't look sick. I suffer from an invisible illness. Those who I haven't told, don't know that I'm sick and those who do know, rarely understand the severity. 

In my last few months, I have felt misunderstood, doubted, and judged because I can't do what a healthy person can...and yet, I look healthy. Managing my invisible illness, neurocardiogenic syncope (whether from a virus producing POTS or from my pituitary macroadenoma) would be significantly easier, if people understood it. Unfortunately, I have rarely met anyone who has any familiarity with dysautonomia. 

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 "automatic" functions of the body like heart rate, blood pressure, digestion, pupil dilation and constriction, kidney function, and temperature control. 

People with dysautonomia, dysfunction of the autonomic nervous system, have trouble regulating these systems, resulting in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, inability to control temperature, and a slew of other seemingly unrelated symptoms. 

Over 70 million people suffer from various forms and degrees of dysautonomia worldwide. Unfortunately, there is no none cure for dysautonomia and despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public within the medical profession. 

I can't do much about my illness. I do PT and I take my meds and I hydrate as best as I can, but I'm out of other options. But I can work to spread awareness so that hopefully, one day, the future Toris out there won't have to give up trips to Scotland. 

October is Dysautonomia Awareness Month! I will be posting more about dysautonomia throughout the month to share information, resources, personal stories of other patients, and general encouragement for the community suffering from autonomic dysfunction. 

So look forward to more information about dysautonomia all month long! 


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