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What Is Dysautonomia?
Dysautonomia means dysregulation of the autonomic nervous system. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.
Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment.
Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed.
Over one million Americans are impacted with a primary autonomic system disorder. The more common forms of these conditions include Postural Orthostatic Tachycardia Syndrome (POTS) / Orthostatic Intolerance (OI), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA)
DINET provides information and personal stories on several types of dysautonomia. You may download our informational brochure HERE.
We publish our newsletter multiple times throughout the year in spring, summer, fall, and winter.
Please see our full issues in pdf format.
In The Latest Issue:
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In The News
Volunteer Spotlight on Meredith Wells and POTS of Awareness
As part of her ongoing effort to promote awareness for POTS and Dysautonomia, this DINET Volunteer began a very original campaign. In Meredith's words:
"Last summer, I was inspired by the success of the ALS Ice Bucket Challenge to create an awareness campaign for Dysautonomia. What I took away from it was the power of social media to spread the message like wildfire and instill peer pressure. I also focused on tapping into what people can contribute. For the people who can afford it, a donation is splendid and goes a long way. For those who cannot contribute a monetary donation, by sending a small (possibly free) gift or posting about the campaign on social media, they are spreading awareness."
How You Can Get Involved
- Purchase a flower pot at your local home improvement store
- Make or purchase a small gift to put inside your pot
- Print out the POTS of Awareness Packet - linked here
- Deliver the pot to any person of your choosing
- Take a picture of the delivery and post it on social media
- Like us at POTS of Awareness on Facebook
Do you have an awareness or fundraising campaign that you would like to share? Send your story to email@example.com
The BIG POTS Survey
Vanderbilt University and Dysautonomia International have partnered to launch the largest international study on Postural Tachycardia Syndrome (POTS). POTS impacts millions around the world, yet no large studies have ever been conducted, until now.
This study enables patients to share their experiences directly with researchers, an important and innovative way to study this illness. Nicknamed “The Big POTS survey”, by the patients who helped design the survey, its official name is “The diagnosis and impact of Postural Tachycardia Syndrome (POTS) – an international study.”
The study’s lead investigator is Satish R. Raj, MD MSCI, Adjunct Associate Professor of Medicine at Vanderbilt University’s Autonomic Dysfunction Center. Dr. Raj says that the information collected as part of this survey “will help us learn more about the possible underlying causes and risk factors for developing POTS, treatments, and the economic, educational and social impact of POTS on patients and their families”. Dr. Raj serves on the Medical Advisory Board for DINET and Dysautonomia International.
The Big POTS survey is open to all patients diagnosed with POTS by a physician. To learn more about the survey or to participate, visit: The BIG POTS survey
The Center for Hypotension Department of Pediatrics is recruiting participants aged 14-29 years old for a study of postural vasovagal syncope (VVS, postural faint) and neuropathic postural tachycardia syndrome (POTS). Exact mechanisms of illness have remained elusive although our past work shows that with upright posture blood is excessively relocated from the central pool to the splanchnic vasculature in both VVS and neuropathic POTS. This occurs because blood vessel contraction (vasoconstriction) is impaired when upright. We hypothesize that impairment occurs because of excessive production of nitric oxide (NO) which reduces the ability of the nerves to produce vasoconstriction.
Further details of the research and representative consent forms can be found on our web-site, syncope.org
Or at our listing on Clinicaltrials.gov
If interested, please reply to:
Courtney Terilli, Research Coordinator
The Center for Hypotension
Department of Pediatrics
19 Bradhurst Avenue, Suite 1600 South
Hawthorne, New York 10532