MEMBER FEATURE: Do you have a project, a craft or art, a hobby - anything that you do that brings you joy, something you feel passionate about? Beginning this month, DINET will be selecting a member to feature on our site, our Facebook page and on Twitter. The page will include links to your site, storefront (if you have one), contact info and photos of your work. If you would like to be considered, please email firstname.lastname@example.org Only one member will be featured at a time.
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.
Do you have a question about dysautonomia for our Medical Advisors? We are currently collecting questions now for the next Medical Q & A column . Send your question to firstname.lastname@example.org by 11/25th Please include your first name, city, state & country
SUPPORT GROUPS HELP!
Share your group's info with other by sending your info to email@example.com
Not a member?
Click here to sign up
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
Recruiting: 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/
Recruiting: Vagal Stimulation in POTS- The Autonomic Inflammatory Reflex (Pilot 3) The purpose of this study is to investigate how the electrical stimulation of a nerve in the skin of your ear lobe (transcutaneous vagal nerve stimulation) affects the way your autonomic nervous system controls your heart rhythm. Participants must be females between the ages of 18 - 45 with POTS. To learn more about this study or to participate, visit https://www.rarediseasesnetwork.org/cms/autonomic/6111
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.
Recruiting: 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
The holidays can be difficult for people living with dysautonomia illnesses. Here are some resources to help make it a bit easier.
Making cooking more accessible: http://www.rootedinrights.org/preparing-for-the-holidays-tips-and-tricks-for-accessible-cooking/
Travel - great info about traveling with a service dog and other tips: https://travel.state.gov/content/passports/en/go/disabilities.html
Food - USDA food & nutrition info: https://www.usda.gov/topics/food-and-nutrition
Food delivery services: https://www.lifewire.com/groceries-online-3482646
The benefits of being grateful: https://www.psychologytoday.com/blog/what-mentally-strong-people-dont-do/201504/7-scientifically-proven-benefits-gratitude
NEWS & INFORMATION
Deadly risks of taking kratom This seemingly innocent natural product can be very harmful to your health.
Sleep disturbances and POTS https://ww2.mc.vanderbilt.edu/adc/43572
IMPORTANT INFORMATION: POTS & Ehlers-Danlos Syndrome
"Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center.
"It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS."For Email Marketing you can trust.
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