What is Dysautonomia? Dysautonomia is an umbrella term used to describe any disorder of the autonomic (or Involuntary) nervous system. These disorders usually involve abnormal symptoms in many organ systems such as cardiac, gastrointestinal, neurological, pulmonary, as well as others, and can range from mild to disabling. A few rare forms of dysautonomia may be considered life threatening. What is The Dysautonomia Project? As an invisible illness, Dysautonomia is likely the most misdiagnosed medical condition of all time. Although many decades of clinical research precede this project, “Dysautonomia is not taught in medical schools,” according to Dr. Thomas Chelimsky, President of the American Autonomic Society. Most patients wait many many years, seeing multiple specialists, before getting a proper diagnosis - and most are initially misdiagnosed with psychiatric disorders. We believe that by educating primary care physicians and pediatricians - the first line of defense in diagnoses - about Dysautonomia, patients will see a faster route to diagnosis, and hopefully better outcomes. GETTING STARTED: We are beginning this journey by launching in the Tampa Bay, FL area. From here we will eventually branch out to communities throughout the US, via our amazing Volunteer Army. It is these volunteers - made up primarily of patients & their loved ones - who will bring The Dysautonomia Project into their own communities. THE BIG GOAL: To train an interdisciplinary team of local physicians in every major community in the United States in 10 years. These physicians will be able to assess, treat and work in consultation with autonomic experts. OUR 10 YEAR VISION:
To partner with patients, physicians, health care provides, hospitals as well as local, state and national leaders to provide easy to access and easy to understand education about dysfunction of the Autonomic Nervous System (ANS) based on more than 30 years of clinical data from leading Dysautonomia researchers around the world. By achieving this vision we would:
• Reduce health care costs by eliminating unnecessary physician visits, diagnostic tests and services.
• Serve as a model in the area of introductory Dysautonomia education for physicians around the world.
• Strive to make "Dysautonomia" a household name. The Dysautonomia Project is a federally approved 501(c)(3) not for profit organization.
