Dysautonomia, also called automatic dysfunction, is a general term that affects the automatic nervous system (ANS). The ANS controls the body’s involuntary functions such as heart rate, digestion, blood pressure, temperature regulation, and pupil response (What is Dysautonomia, 2021). Dysautonomia International (2019) states that when the nerves in the ANS do not communicate properly, then this may result in a variety of symptoms, such as lightheadedness, fainting, unstable blood pressure, an abnormal heart rate, and malnutrition. Some dysautonomia conditions are rare, while others are more common. There is currently no cure for dysautonomia; however therapies and medications have been found to manage symptoms.
Depending on the child’s stage of development, here are some key words you can use when explaining dysautonomia to children:
• Automatic Nervous System – tells your body how to feel, move, breathe, and to digest food
According to The Dysautonomia Project (2021), the most common symptoms of dysautonomia include:
• Difficulty standing still
• Fatigue
• Lightheadedness
• Nausea and other GI symptoms
• Brain fog and mental clouding
• Palpitations or chest discomfort
• Shortness of breath or difficulty breathing
Dysautonomia International (2019) highlights a few different forms of dysautonomia, which include:
- Postural Orthostatic Tachycardia Syndrome (POTS) – “POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more (What is dysautonomia, 2019).”
- Neurocardiogenic Syncope (NCS) – The most common form of dysautonomia.
- Multiple System Atrophy (MSA) – “A fatal form of dysautonomia that occurs in adult ages 40 and older. It is a neurodegenerative disorder with some similarities to Parkinson’s disease, but unlike Parkinson’s patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years. MSA is considered a rare disease, with an estimated 350,000 patients worldwide (What is dysautonomia, 2019).”
Dysautonomia Facts
• Nearly 70 million people are affected by dysautonomia worldwide (Cleveland Clinic, 2020).
• There are at least 15 distinct dysautonomias; the most common are postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (Identifying Dysautonomia, 2021).
• Individuals of any age, gender, or race can be impacted by dysautonomia (What is Dysautonomia, 2019).
• Dysautonomia affects women and men equally (Cleveland Clinic, 2020).
Resources
- Websites
• https://www.dysautonomiainternational.org/
• https://thedysautonomiaproject.org/
• https://www.dysautonomiasupport.org/ - Books
• The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients by Kelly Freeman, David S. Goldstein, and Charles R. Thompson
• Defeating Dysautonomia by Tara Smith Johnson
• Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition: 1st Edition by Derrick Lonsdale and Chandler Marrs
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References
Dysautonomia: Symptoms, causes, types, & how to live with. Cleveland Clinic. (2020). Retrieved from https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
Identifying dysautonomia. The Dysautonomia Project. (2021). Retrieved from https://thedysautonomiaproject.org/identifying-dysautonomia/
What is dysautonomia? Dysautonomia International: (2019). Retrieved from http://www.dysautonomiainternational.org/page.php?ID=34
What is dysautonomia? Dysautonomia Support Network. (2021). Retrieved from https://www.dysautonomiasupport.org/what-is-dysautonomia/