• 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 webmaster@dinet.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?

    Medical Q & A         

    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 webmaster@dinet.org   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 webmaster@dinet.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 webmaster@dinet.org
     


    Join the forum conversation!

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  • 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 

  • A Series presented by DINET and Dr. Svetlana Blitshteyn

    POTS_DRB_intro.jpgPOTS_DRB_3.jpg.cb121c88544ca3f565c97928afb09f38.jpgPOTS_DRB_1.jpgPOTS_DRB_2.jpg

     

     

  •  

    DINET Announces 3 New Partnerships!

    BBag logo.jpg     OutcomeHealth_logoFINAL.jpg.4a1cb1f36239259831b618cf4264b316.jpg       TheMightyLogo-red.png

    Click here to view information on our partners and read about how they strive to impact the dysautonomia community