Hereditary Dysautonomias: Current Knowledge and Collaborations for the Future. National Institute of Neurological Disorders and StrokeHereditary Dysautonomias: Current Knowledge and Collaborations for the FutureMeeting ReportOctober 3-4, 2002 Written by Math Cuajungco PhD, for the National Institute of Neurological Disorders and Stroke and Office of Rare Diseases Introduction The hereditary dysautonomias are a large group of disorders that affect the autonomic nervous system.
Taken together, inherited forms of dysautonomia are actually quite common in the population. Recently, medical scientists, NIH/NINDS representatives, and several patient support groups gathered for a workshop in order to discuss recent findings and future directions in the field. The subject of the first session of the workshop was familial dysautonomia (FD), the first of the hereditary dysautonomias to be well described and extensively studied. The second session provided an expanded perspective on various forms of dysautonomia and dysautonomia-associated genetic polymorphisms. Top Agenda. Dysautonomia Information Page. What is Dysautonomia?
Dysautonomia refers to a disorder of autonomic nervous system (ANS) function. Most physicians view dysautonomia in terms of failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive ANS activities also can occur. Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive. Several common conditions such as diabetes and alcoholism can include dysautonomia. Is there any treatment? There is no cure for dysautonomia. What is the prognosis? The outlook for individuals with dysautonomia depends on the particular diagnostic category. What research is being done? The NINDS supports and conducts research on dysautonomia.
Prepared by: Office of Communications and Public Liaison National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda, MD 20892. Research & Training. Autonomic Dysfunction Center - Research Information. PrettyIll.com. Postural orthostatic tachycardia syndrome. The postural orthostatic tachycardia syndrome: a neurocardiogenic variant identified during head-up tilt table testing.
Grubb BP, Kosinski DJ, Boehm K, Kip K Pacing Clin Electrophysiol. 1997 Sep; 20(9 Pt 1):2205-12. [PubMed] [Ref list] The postural orthostatic tachycardia syndrome: a potentially treatable cause of chronic fatigue, exercise intolerance, and cognitive impairment in adolescents. Karas B, Grubb BP, Boehm K, Kip K Pacing Clin Electrophysiol. 2000 Mar; 23(3):344-51. [PubMed] [Ref list] Why do patients have orthostatic symptoms in POTS? Low PA, Schondorf R, Rummans TA Clin Auton Res. 2001 Aug; 11(4):223-4. [PubMed] [Ref list] Orthostatic intolerance and the postural tachycardia syndrome: genetic and environment pathophysiologies.
Robertson D, Shannon JR, Biaggioni I, Ertl AC, Diedrich A, Carson R, Furlan R, Jacob G, Jordan J, Neurolab Autonomic Team Pflugers Arch. 2000; 441(2-3 Suppl):R48-51. [PubMed] [Ref list] Hyperdynamic beta-adrenergic circulatory state. Studing Astronauts' Hearts in Space. Updated April 16, 2011 12:01 a.m.
ET Researchers in the midst of a several years' study of how astronauts' hearts react during long space voyages reported initial findings that they say could help improve cardiac care on Earth. They found that astronauts benefitted from certain types of exercise, something that could help patients with heart failure or abnormal heartbeats, or those who are bedridden after surgery, a stroke, or during pregnancy, whose hearts atrophy much like an astronaut's in space.
Heart muscles don't have to work as hard to circulate blood in space because gravity doesn't exert the same force. Astronauts returning from missions frequently feel lightheaded and sometimes pass out. What's Lost in Space Studying how astronauts' bodies change in space may help patients on Earth. Heart mass decreases up to 25% Blood volume decreases up to 20% Bone density decreases about 3% Blood pressure stays relatively the same.
Source: Benjamin Levine; Michael Bungo. Patients Research Dysautonomia. This group does not have a welcome message.
Thank you for joining Patients Research Dysautonomia (PRD). You have been selected because of your trusted knowledge and effort in spreading dysautonomia awareness. There are so many resources out there that are useful to us dysautonomics. I have enjoyed watching your personal YouTube accounts of your struggles with this illness. I am hoping that we can come together as a group to research, curate and disseminate research information that we find on the internet or within our studies outside of the internet. That's my simple vision. Above all else, I am hoping that we will be of assistance to those newly diagnosed patients who simply need support at the beginning of their post-diagnostic journey. Be good. Be patient. Be in the moment. ~MissNikkiAnn, PRD Founder/Moderator/Researcher/Writer.