Stories and community of strength, perseverance, and hope.

the Dysunderstood Podcast

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DYSUNDERSTOOD

  • The most common response for how individuals describe their experience with dysautonomia, chronic illness, and disability=

    Misunderstood

    Mission: Dysautonomia Understood

  • 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. (source: Dysautonomia International)

    • 1 in 100 young people will develop dysautonomia.

    • More than 70 MILLION people worldwide are living with dysautonomia.

    • The average patient waits 6 years to be diagnosed with dysautonomia

 

“the voices of those living with dysautonomia deserve to be heard, amplified, and believed.”

— Ella Eastin

Conference

2023

August 12, 2023

FREE, Virtual & Recorded

This summer, dysunderstood community hosted our first conference focused on the patient experience and community connection.

Videos Available to:

  • Hear from experts, patients, and experienced spiritual care leaders.

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