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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
,From Nina Wilde, President:
This has been a year of many changes for DINET! It is with a sense of happiness and pride in my fellow board members, our moderation team, and the many, many members who help to keep this a vibrant and supportive place, I step away after 12 years of volunteering here. It is with great excitement, I extend a warm welcome to Megan Scholl as the new Board President of DINET. It's time to allow this fantastic group of people to take DINET even further forward. I will always be a member of the forum, and a supporter of DINET's mission. To each person out there who helped along this journey in some way, I say thank you. Warmly, Nina
From Kelly Tucker, Executive Director:
I am so happy to have Megan on board. She comes with a wealth of experience and knowledge. She has been a surgical PA for the last 13 years and is a POTS patient herself. She has been raising awareness on her own for years through a fun run, counseling patients, and has a local POTS support group and website. A little about Megan in her own words.
"I vowed if I ever got well enough to do so, I would help others so they would not have to go through what I went through. So I began reaching out to anyone who would listen. I am so excited to begin working with DINET to continue my awesome journey where I can help people on a larger scale!" Megan is so excited to start her work at DINET.
In other DINET news, Welcome to the Board of DINET to one of our volunteers - Sarah Abraham! She has joined us as a general board member, and has been a wonderful asset over the years. She will bring valuable insight from the perspective of her direct involvement as a volunteer and working with the forum.
To read more about Megan, Sarah, the other Board Members, and the volunteers for DINET, please visit the About Us page.
Modafinil and Cognifive Function in POTS
A common complaint among POTS patients is brainfog or difficulty concentrating, this problem is poorly understood. The purpose of this study is to better understand the cognitive dysfunction related to POTS and the optimal treatment strategies for this condition. To read more about this study, visit Clinical Trial page
Contact: Bonnie Black, RN Adcresearch@vanderbilt.edu
G-PACT Registry (Gastroparesis Patient Association for Cures and Treatments, Inc.), in conjunction with Genetic Alliance has developed an interactive Registry to collect data from gastroparesis patients that be made available to researchers and advocacy organizations. Participation is important. Each person with gastroparesis has had a different journey and different experiences and everyone will have something unique to contribute! Patients, care-takers and family members are encouraged to participate.
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.
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). more info.. 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