POTS & Dysautonomia

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia that affects the autonomic nervous system and can influence heart rate, circulation, energy, digestion, temperature regulation, concentration, and many other body functions. POTS symptoms can vary from day to day and may significantly affect school, work, physical activity, and daily functioning. The resources below offer education, practical strategies, and lived-experience perspectives for children, teens, young adults, and families navigating pediatric POTS, dysautonomia, and related autonomic nervous system conditions.

Dysautonomia

Support Network Handbooks

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Postural Orthostatic Tachycardia Syndrome (POTS)

POTS UK

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Postural Orthostatic Tachycardia Syndrome (POTS)

Standing Up To POTS

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Dysautonomia International – Patient Education Resources

A comprehensive collection of educational materials, practical tools, videos, support resources, and information for people living with POTS and other forms of dysautonomia.

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Johns Hopkins Medicine – Postural Orthostatic Tachycardia Syndrome (POTS)

A clear medical overview of POTS, including common symptoms, diagnosis, causes, and treatment approaches.

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Standing Up to POTS – Living with POTS: Patient Stories

Personal stories from people living with POTS, including adolescents and young adults, describing their experiences with symptoms, school, daily life, treatment, and adaptation.

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Compass Points the Way

A middle-grade fictional story about a 12-year-old girl navigating life after developing POTS. May be especially helpful for younger adolescents and families looking for an age-appropriate example of living with dysautonomia.

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The Dysautonomia Workbook

A practical resource developed by occupational therapists that combines education about dysautonomia with worksheets and strategies for managing daily routines, activity, symptoms, and participation in meaningful activities.

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