The July issue of Dysautonomia News is available now! Written by members, for members. Articles about living with dysautonomia - the struggles and the triumphs. Also included in this issue is our Medical Q & A - your questions answered by our Medical Advisory Team. And this time around, we are asking you to participate in a very short anonymous survey (only 8 questions) designed to help us know more about age and the relationship to diagnosis. Please take a moment or two to help us.
Would you like to volunteer for DINET? DINET is an all volunteer organization and we rely on dependable people willing and able to help. If you would like to volunteer, please contact email@example.com or visit our Get Involved section to learn more about volunteering.
Dysautonomia is a term used
to describe abnormal functioning of
the autonomic nervous system
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.
Do you have a question for our Medical Expert's?
DINET's Medical Advisors are physicians who specialize in different aspects of dysautonomia treatment and research. We are honored that these dedicated professionals share their time and knowledge with us and you! DINET's Board Secretary & Forum Volunteer, Sarah Abraham, collects questions from DINET members and sends them along to our Medical Advisor team. Each quarter Sarah prepares the Medical Q & A column for our newsletter and shares those questions and answers with the DINET community. If you have a question for our advisors, send it along to Sarah at firstname.lastname@example.org
Dysautonomia Discussion Forum: Trending Topics
Connect With Others on Our Forum..
The DINET Forum allows you to meet others living with similar symptoms and experiences. With almost 6,000 members our community provides you with the opportunity to exchange tips and information, share your story, seek and offer support and encouragement and much more! Patients and caregivers can easily register here
Ongoing Studies & Study Information
Results from the Patients Count Study. The study examined the quality of life for 1500 patients living with POTS-Cluster disorders. Read the results of the survey here.
Standing Up to POTS has partnered with counselors and suicide prevention specialists to examine the risk of suicide in chronically ill populations. To learn more about this study, please visit Standing Up to POTS This study has been approved by the Wittenberg University Institutional Review Board.
Recruiting: Clinical Autonomic Disorders: A Training Protocol is a study to learn more about dysautonomias to the specific purpose of developing training protocols to help new physicians understand the illness and to better diagnose patients. To participate in the study or read more about it, visit our studies page or go directly to the clinical trials site.
The Big POTS Survey is still going on.
Vanderbilt University and Dysautonomia International sponsored survey. The study's lead investigator is Dr. Satish Raj, MD MSCI, Adjunct 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.
Go directly to the survey
In The News...
Please participate in our survey - 8 questions related to the age you were when you became ill.
A New Series presented by DINET and Dr. Svetlana Blitshteyn
We're thrilled to share with you that DINET & The Mighty have a new partnership that will bring many resources to our readers! The Mighty is a story-based health community that focuses on improving the lives of people facing diseases and disabilities and shares in DINET's mission of raising awareness for chronic health conditions. More than half of Americans are facing serious health conditions, The Mighty publishes real stories about real people facing real challenges. Visit The Mighty and check out stories like this on Dysautonomia & POTS, "When POTS challenges your identity as an overachiever"
DINET Announces 3 New Partnerships!
Click here to view information on our partners and read about how they strive to impact the dysautonomia community