DINET relies on volunteers and donations to keep doing the work we do. Please consider doing both by taking the Five Eleven Challenge!
FIVE YEARS & ELEVEN MONTHS waiting to be diagnosed! CHALLENGE: Approach 5 people in your life that need to know more about dysautonomia, share an info sheet that best suits them. Ask each person to donate on your behalf to DINET. Use PayPal to donate and they cover all the fees For other ways to donate, see our Donate page Also, check out the "why donate" section for the many other reasons to donate. It is tax deductible - all of it, and remember that DINET can't exist without the donation of funds and time from you & the people who care.* Our goal is to inspire each person to donate at least $10 So each member is contributing a total of $50 This is the fundraising goal, however, DINET is greatly appreciative of all donations made to our work. Sincere Thanks.
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! If you have a question that you would like answered by our advisory team, please send it to email@example.com Questions are posted in our quarterly newsletter.
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
NEW Two new studies open for patients with MSA. The NYU Dysautonomia Center has 2 new clinical trials to test new drugs that are being developed for the treatment of OH in patients with MSA. Both compounds work by enhancing the body's levels of norepinephrine. Both studies are also being carried out at the Autonomic Dysfunction Center at Vanderbilt University. NYU Dysautonomia Center and Vanderbilt are long time collaborative partners in rare autonomic disorders. Contact information and more information about the studies can be found in this article. https://dysautonomiacenter.com/2017/04/10/two-new-studies-open-for-patients-with-msa/
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...
SURVEY RESULTS ARE IN! Thank you all for participating in the first phase of our survey investigating the age of onset and experiences we have gone through in becoming diagnosed with dysautonomia. We hoped for 100 participants and had 230. Out of the 224 respondents who answered the question, "how old were you when diagnosed?" 122 were between the ages of 13 - 40 and 102 were between 41 and 70 years old. The sad news is that over 50% of respondents were given sedatives and/or antidepressants for anxiety disorders instead of the treatment they needed for dysautonomia. The full survey results will be published shortly. Thank you all for participating.
A 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. A recent story about how dysautonomia affects social interactions can be found at The Mighty. If you find that topic helpful, you may want to also read an article from DINET's newsletter about how to deal with questions about disability and working in the article, The dreaded question by Sarah Phelps.
DINET Announces 3 New Partnerships!
Click here to view information on our partners and read about how they strive to impact the dysautonomia community