Tuesday Infuseday

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Syncope

Hanging off a ledge,

   The aching hole beneath my dangling feet

is waiting to devour me.

I try to scream, but my breath is caught

   as my fingers curl

     around slippery thoughts

     and jumbled words

and suddenly I’m falling–

   tumbling faster and faster

into the abyss

         until

       nothing.

Dysautonomia Awareness Month: Day #5

Fact: Young adults with Dysautonomia often face such severe symptoms that they are left tragically ill and socially isolated during the prime of their developing lives. Because the symptoms of these conditions are often invisible to the casual observer, most Dysautonomia patients don’t look sick. This tends to lead to a lack of understanding and support for the person suffering.

Dysautonomia Awareness Month: Day #4

Fact:  POTS and other dysautonomias are often misdiagnosed.  The average time to diagnosis is 5 years and 11 months.  85% of patients are told it’s “all in their head” or given similar psychiatric labels prior to receiving their Dysautonomia diagnosis…however, research shows that POTS patients are no more likely to have psychiatric disorders than healthy controls (Dysautonomia International).

Dysautonomia Awareness Month: Day #3

Fact: The majority of Dysautonomia patients- specifically POTS patients- are hypovolemic, despite adequate hydration.  Standard blood and urine tests may not always detect this hypovolemia, as the patient is typically deficient in plasma and red blood cells.  Blood volume analysis with a radio-tracer can be used to evaluate a POTS patient for hypovolemia (Dysautonomia International).

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Hypovolemia, or low blood volume, is a daily struggle for me.  In order to combat this issue, I receive two to four liters of IV Saline each week, as well as push a liter or more of water and Pedialyte through my j-tube each day.

Dysautonomia Awareness Month: Day #2

Fact: A type of Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS) is estimated to impact 1 in every 100 teens before they reach adulthood.  There are an estimated 500,000 to 1,000,000 people living in the United States alone.  While the majority of those afflicted are young women, POTS can be found in all ages, genders and races (Dysautonomia International).

October Is Dysautonomia Awareness Month!

What is 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 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, temperature regulation, etc.

The Autonomic Nervous System
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Ribbon for Dysautonomia Awareness at Duke Raleigh Infusion Center
Stronger Than Dysautonomia
Stronger Than Dysautonomia!