What is Dysautonomia?
Dysautonomia refers to a spectrum of neurological disorders that involve the autonomic nervous system (ANS). Hallmarks symptoms of dysautonomia due to sympathetic failure is a fall in blood pressure during standing or neurogenic orthostatic hypotension (nOH). When the ANS misfires and produces excessive sympathetic activity the symptoms can present as hypertension or a rapid pulse rate as seen in patients wit Postural Orthostatic Tachycardia Syndrome (POTS) and Hyperadrenergic POTS (hPOTS), Other forms include Neurocardiogenic Syncope (NCS), Orthostatic Intolerance (OI), Autoimmune Ganglionopathy (AAG), Pure Autonomic Failure (PAF), Multiple System Atrophy and others.
Symptoms may affect every system in the body, are unpredictable, can be debilitating at times or permanently disabling to some. These disorders effect children, teens and adults. There is currently no cure but ongoing research is offering hope for better understanding and new treatment options. Over a 70 million people in the world are living with one or more forms of dysautonomia.
How does DSN help?
DSN is a U.S. based, 501 (C) (3) non-profit, organization providing support, resources, education and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation and Gastric Motility Disorders.
We empower our members by supplying them the tools, support, education and resources they need to adapt to life with chronic illnesses while challenging themselves to set new goals despite their physical limitations. Toward this end, we provide scholarships for education, volunteer opportunities, advocacy training, service dog grants, educational programs and other essential resources to enable our members to actualize their dreams. We are an all volunteer organization, run by patients for patients.
We offer support, training, awareness programs and socialization opportunities for individuals and families living with complex chronic illness globally. We currently manage more than 60 online support groups 24/7, 365 days a year. We use technology to reach out to those in need, including the homebound, by offering virtual meetings and social events, online educational opportunities, and social opportunities. DSN State Chapters, also hold in-person meetings, events, and fundraisers across the United States.
Our global network encompasses our online Global Support Community and Facebook support groups in all 50 state. Our global support community includes an Inspire group; our international Facebook Support Group - DSN Divas & Dudes, which was recently recognized as a "meaningful community" by Mark Zuckerberg at the 2017 Facebook Community Summit; and our DSN Lifestyle Clubs, which promote the hobbies, interests, and personal growth of our members. In 2017 DSN also launched a Dysautonomia Caregiver Community.
What is Dysautonomia?