LEARN about DINET's partnership with the All of Us Research Program and why we believe it will benefit rare diseases like dysautonomia.
READ & SHARE read about what DINET is doing to spread awareness and read about what other members are doing to bring awareness and education about dysautonomia disorders. Let us know what you are doing for October Awareness Month. Email email@example.com
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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 firstname.lastname@example.org Questions are posted in our quarterly newsletter.
Discussion Forum: Trending Topics
Ongoing Studies & Study Information
NEW: RECRUITING: The NIH All of Us Research Program is now open to people with or without illness. This project's goal is to amass data from 1 million plus people in the U.S. to provide physicians and researchers the ability to use Precision Medicine to prevent, diagnose, treat and potentially cure disease and disorders in this country. DINET is a Champion partner of this program and more information can be found on our site here
NEW: Recruiting: The investigators propose to conduct a safety, tolerability and early proof of concept efficacy study of phosphatidylserine in patients with FD. The long-term goal is to find an effection nutritional therapy that will improve the quality of life for patients with FD and alter disease prognosis Contact & participation information is available - https://clinicaltrials.gov/ct2/show/NCT02276716?cond=Dysautonomia&rank=5
NEW: Recruiting: PET Imaging Study of Neurochemical and Autonomic Disorders in Multiple System Atrophy (MSA) From the University of Michigan This study aims to better understand the patterns and timings of nerve degeneration relatively early on and how it affects symptoms and progression. Contact & participation information available https://clinicaltrials.gov/ct2/show/NCT02035761?recrs=ab&cond=Dysautonomia+Orthostatic+Hypotension+Syndrome&rank=4
Recruiting: A Study of Pyridostigmine in Postural Tachycardia Syndrome. This is a 3-day study being conducted by the Mayo Clinic comparing pyridostigmine vs placebo in the treatment of POTS. http://www.mayo.edu/research/clinical-trials/cls-20128843
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. 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) study 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. 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
NEWS & INFORMATION
New: Diclofenac linked to increasing risk in cardiovascular health. Research by The BMJ - https://www.bmj.com/content/362/bmj.k3426
Updated from CDC: https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455
Study results: Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607
Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR.
Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study
Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018
Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS
Article synopsis: https://bit.ly/2GhF5FK
Research Article: https://insight.jci.org/articles/view/98410
Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php
Genomics and Health Impact Blog - a discussion about gene testing from the CDC
There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/
1st lab test to detect concussion approved by FDA
For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough
Neuroprotective diet having good results for people living with MSA
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.
The Mighty and DINET are partners! 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. To follow stories related to dysautonomia, please visit https://themighty.com/dysautonomia/
Click here to view information on our partners and read about how they strive to impact the dysautonomia community