Conversations With Our Community: Autonomic Symptoms, Ehlers-Danlos Syndromes (EDS), and HSD

President for The Ehlers-Danlos Society, Lara Bloom, speaks with Syanne Bloom, Larry Constant Jnr., and Richard Brory about living with autonomic issues and Ehlers-Danlos syndromes (EDS), and the impact on quality of life and mental health.

Dysautonomia is frequently seen in people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders (HSD). It is a malfunction of the part of the nervous system responsible for controlling automatic functions like heart rate and blood pressure, breathing, temperature regulation, and digestion. ⁠⁠People with dysautonomia can present at their doctor's office with numerous, seemingly unrelated problems. For many, it takes a long time for the diagnosis to be made, and some are even told it is “all in their head”.⁠⁠

In EDS and HSD, the most common dysautonomia concerns of the heart and blood pressure are Postural orthostatic Tachycardia syndrome (POTS) and Orthostatic hypotension (OH) or delayed Orthostatic hypotension respectively. ⁠⁠

In POTS the heart rate rises higher than normal with palpitations of a racing beat. In OH the blood pressure drops lower than normal and can cause a person to grey out or lose consciousness. ⁠

Resources:

Cardiovascular Autonomic Dysfunction involvement in EDS: https://www.ehlers-danlos.com/2017-ed...

Conference videos and webinars:    • Autonomic Nervous System  

For questions on autonomic concerns: www.ehlers-danlos.com/eds-helpline