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  • DINET - Dysautonomia Information Network
    Who Are We Why DINET Our Community Knowledge Is Power Dysautonomia has many faces and countless effects Meet People Like You Knowing you aren t alone can make all the difference Find The Help You Need Physicians information user groups and more DINET Blog We publish our newsletter multiple times throughout the year in spring summer fall and winter Please see our full issues in pdf format In The Latest Issue Click Here to download your copy today In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs celiac disease chronic fatigue syndrome fibromyalgia mastocytosis and postural tachycardia syndrome POTS as well as minimal cognitive impairment an early clinical presentation of Alzheimer s disease AD and other neuropsychiatric disorders Brain fog may be due to inflammatory molecules including adipocytokines and histamine released from mast cells MCs further stimulating microglia activation and causing focal brain inflammation Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases The flavone luteolin has numerous useful actions that include anti oxidant anti inflammatory microglia inhibition neuroprotection and memory increase A liposomal luteolin formulation in olive fruit extract improved attention in children with

    Original URL path: http://www.dinet.org/ (2016-04-26)
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  • About Us
    dogs and two cats She earned a Master s Degree in Library and Information Science from Wayne State University and a Bachelor s Degree from the University of Michigan Dearborn in Psychology She currently works as a Reference Department Manager in a large public library system She developed POTS in 1999 Frustrated by the lack of available resources on this disorder she created the website potsplace com in April 2002 She then founded the Dysautonomia Information Network DINET in 2003 At that time the POTS Place website contents were merged with expanded information available through the Dysautonomia Information Network Michelle served as president of DINET from 2003 2011 When not working Michelle enjoys hiking reading researching boating gardening and spending time with her family Ellen Driscoll General Board Member Newsletter Manager Webmaster Ellen lives in New Hampshire with her husband Jeff her yellow lab Winston and her crazy cat Cosmo She enjoyed a long and successful career in newspaper and web publishing before leaving her profession to better cope with her illnesses Ellen s scoliosis was discovered when she was 18 followed by a Lupus diagnosis at 20 She began having symptoms of autonomic failure immediately following extensive spine surgery in 2010 Even though Ellen came out of anesthesia with immediate signs that something was wrong it still took another 3 years before the words dysautonomia and POTS were mentioned After discovering dinet org and reading other survivor s stories on the forum Ellen began volunteering She is very happy to put her professional skills to use and help DINET thrive She is reminded everyday that life is sweet by spending time with her family and the loves of her life her three granddaughters Jordan Remy and Avery One of the biggest adjustments has been leaving behind an athletic life but new hobbies fill that time and keep her busy Gardening walks in the woods with Winston cooking sewing and an occasional ride on the ATV are all things she looks forward to on good days On quiet days you ll find her reading and writing Michael Blaney General Board Member Newsletter Designer Forum Ambassador Michael Blaney lives in Chicago Illinois with his beautiful dog Emma While attending college at the University of San Diego he began suffering from numerous symptoms related to both migraine with aura as well as POTS The journey for a POTS diagnosis was slow and hard to come by Only with a downturn in symptoms were doctors lead to believe that the head rushes episodic nausea and exercise intolerance might be signs of autonomic problems Though suffering since 2009 a diagnosis of POTS was officially made in 2012 through a full patient history and tilt table test He discovered the DINET forum and used the knowledge base and support from other sufferers to help learn more about his own condition As time went on he pursued volunteer work with DINET as a way to give back to the community that continued to help him on

    Original URL path: http://www.dinet.org/index.php/about-us (2016-04-26)
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  • About Us
    the position of Executive Director at DINET Meet our Board of Directors and Just a Few of our Volunteers Michelle Sawicki Vice President Michelle Sawicki lives in Missouri with her husband three dogs and two cats She earned a Master s Degree in Library and Information Science from Wayne State University and a Bachelor s Degree from the University of Michigan Dearborn in Psychology She currently works as a Reference Department Manager in a large public library system She developed POTS in 1999 Frustrated by the lack of available resources on this disorder she created the website potsplace com in April 2002 She then founded the Dysautonomia Information Network DINET in 2003 At that time the POTS Place website contents were merged with expanded information available through the Dysautonomia Information Network Michelle served as president of DINET from 2003 2011 When not working Michelle enjoys hiking reading researching boating gardening and spending time with her family Ellen Driscoll General Board Member Newsletter Manager Webmaster Ellen lives in New Hampshire with her husband Jeff her yellow lab Winston and her crazy cat Cosmo She enjoyed a long and successful career in newspaper and web publishing before leaving her profession to better cope with her illnesses Ellen s scoliosis was discovered when she was 18 followed by a Lupus diagnosis at 20 She began having symptoms of autonomic failure immediately following extensive spine surgery in 2010 Even though Ellen came out of anesthesia with immediate signs that something was wrong it still took another 3 years before the words dysautonomia and POTS were mentioned After discovering dinet org and reading other survivor s stories on the forum Ellen began volunteering She is very happy to put her professional skills to use and help DINET thrive She is reminded everyday that life is sweet by spending time with her family and the loves of her life her three granddaughters Jordan Remy and Avery One of the biggest adjustments has been leaving behind an athletic life but new hobbies fill that time and keep her busy Gardening walks in the woods with Winston cooking sewing and an occasional ride on the ATV are all things she looks forward to on good days On quiet days you ll find her reading and writing Michael Blaney General Board Member Newsletter Designer Forum Ambassador Michael Blaney lives in Chicago Illinois with his beautiful dog Emma While attending college at the University of San Diego he began suffering from numerous symptoms related to both migraine with aura as well as POTS The journey for a POTS diagnosis was slow and hard to come by Only with a downturn in symptoms were doctors lead to believe that the head rushes episodic nausea and exercise intolerance might be signs of autonomic problems Though suffering since 2009 a diagnosis of POTS was officially made in 2012 through a full patient history and tilt table test He discovered the DINET forum and used the knowledge base and support from other sufferers to

    Original URL path: http://www.dinet.org/index.php/about-us/about-us (2016-04-26)
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  • Advisors
    Dr Blitshteyn returned to Buffalo where she is now practicing general neurology and autonomic disorders and serving as a Clinical Assistant Professor at the State University of New York at Buffalo School of Medicine and Biomedical Sciences Dr Blitshteyn s research on hormone replacement therapy and meningioma received national recognition and a Research Award from the Florida Society of Neurology She was also the recipient of the Merck US Health Award from the American Headache Society She is currently leading research projects investigating the causes of Postural Orthostatic Tachycardia Syndrome Satish R Raj MD MSCI Vanderbilt University Satish R Raj grew up in Toronto Ontario Canada He graduated from Queen s University Faculty of Medicine in Ontario in 1993 After completing residency training in Internal Medicine and Cardiology at Queen s University he moved on to a fellowship in Clinical Cardiac Electrophysiology at the University of Calgary In 2002 Dr Raj moved to Nashville Tennessee as a Research Fellow in Clinical Pharmacology at Vanderbilt University s Autonomic Dysfunction Center and completed a Masters of Science in Clinical Investigation He spent 12 years at Vanderbilt University Nashville TN working primarily as a clinical research in the Vanderbilt Autonomic Dysfunction Center Under the mentorship of Dr David Robertson at Vanderbilt University Dr Raj developed a research program and obtained research funding for studies on postural tachycardia syndrome POTS and vasovagal syncope In 2014 Dr Raj moved back to the University of Calgary He is currently an Associate Professor of Cardiac Sciences in the Libin Cardiovascular Institute of Alberta at the University of Calgary His clinical focus is on heart rhythm problems particularly those that require pacemaker and defibrillators and autonomic disorders He is also setting up a clinical research program focused on Autonomic Disorders Dr Raj serves on the Board of Directors of the American Autonomic Society AAS and the Association for Clinical and Translational Sciences ACTS His primary research interests are to understand the cause and find more effective treatments for POTS and vasovagal syncope as well as disorders of the autonomic nervous system Julian M Stewart MD PhD New York Medical College Dr Stewart received MD and PhD degrees from the University of Chicago studying cardiac physiology He is a trained pediatric cardiologist and an integrative physiologist Dr Stewart s initial work concerned vascular physiology and was performed in the laboratory of Dr Thomas Hintze in Physiology at New York Medical College Subsequently physiology methods were translated into measurements in conscious humans largely adolescents and young adults These are primarily noninvasive adaptations of classical blood flow techniques Dr Stewart s work and funding now centers around understanding the physiology of orthostatic intolerance in young people its relation to vascular control mechanisms and their impact on the autonomic nervous system The technological focus has been on the development and use of methods to measure regional blood flow and endothelial function in patients and in healthy volunteers He has developed methods using a combination of segmental impedance plethysmography strain gauge plethysmography ultrasound

    Original URL path: http://www.dinet.org/index.php/about-us/advise (2016-04-26)
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  • Newsletters
    Support Groups POTS Place POTS Overview POTS Symptoms POTS Mechanisms POTS Causes POTS Detection POTS What Helps POTS What to avoid POTS Myths POTS Research POTS Useful Links POTS Video NCS NCS General Information NCS Links PAF Informative Links MSA Informative Links Assistance Studies Dysautonomia Links DINET Informational Brochure Community Join DINET Forum Member Stories DINET Connect Program Info DINET Connect Log In DINET Connect Registration Physician List Help Us Donate Volunteer Physician Brochures Disclaimer Forum POTS Overview Donate DINET Connect Login DINET Newsletters We publish our newsletter multiple times throughout the year in spring summer fall and winter Please see our full issues in pdf format In The Latest Issue Click Here to download your copy today Complete Newsletter Archive Filename 2016 Winter Newsletter 2015 Winter Newsletter 2015 Summer Newsletter 2015 Spring Newsletter 2015 Fall Newsletter 2014 Summer Newsletter 2014 Spring Dinet Newsletter 2014 Fall Newsletter 2013 Winter Newsletter 2013 Summer Newsletter 2013 Fall Newsletter 2012 Summer Newsletter 2011 Spring Newsletter 2011 Fall Newsletter 2010 Summer Newsletter 2010 Spring Newsletter 2009 Winter Newsletter 2009 Summer Newsletter 2009 Fall Newsletter 2008 Winter Newsletter 2008 Summer Newsletter 2007 Winter Newsletter 2007 Summer Newsletter 2007 Spring Newsletter 2007 Fall Newsletter 2006 Winter

    Original URL path: http://www.dinet.org/index.php/information-resources/newsletters (2016-04-26)
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  • Knowledge Base
    Article Count 1 PAF Article Count 1 MSA Article Count 1 DINET Article Count 2 Display 5 10 15 20 25 30 50 100 All Title Author Hits Welcome To Our Knowledge Base Hits 1304 In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as loss of short and long term memory Brain fog characterizes patients with autism spectrum disorders ASDs celiac disease chronic fatigue syndrome fibromyalgia mastocytosis and postural tachycardia syndrome POTS as well as minimal cognitive impairment an early clinical presentation of Alzheimer s disease AD and other neuropsychiatric disorders Brain fog may be due to inflammatory molecules including adipocytokines and histamine released from mast cells MCs further stimulating microglia activation and causing focal brain inflammation Recent reviews have described the potential use of natural flavonoids for the treatment of neuropsychiatric and neurodegenerative diseases The flavone luteolin has numerous useful actions that include anti oxidant anti inflammatory microglia inhibition neuroprotection and memory increase A liposomal luteolin formulation in olive fruit extract improved attention in children with ASDs and brain fog in mastocytosis patients Methylated luteolin analogs with increased activity and better bioavailability could be developed into effective treatments for neuropsychiatric disorders and brain fog To read the full article www ncbi nlm nih gov pmc articles PMC4490655 The BIG

    Original URL path: http://www.dinet.org/index.php/information-resources/knowledge-base (2016-04-26)
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  • Support Groups
    for details Location United States Name The Multiple System Atrophy Coalition Leader Judy Biedenharn jbiedenharn msacoalition org Vera James vjames msacoalition org Website http www multiple system atrophy org Location Virginia beyond via email telecons Name NOVA MVPS Dysautonomia OI Support Group Leader Elly Brosius MVPS D OI NOVA owner yahoogroups com Meetings Second Tuesday of every month noon eastern by conference calls Email group leader for details Website http www cfsnova com mvpsoi html Email Group http health groups yahoo com group MVPS d oi nova Location Southern New England Name Dysautonomia Divas Dudes Zebras of New England Leader Amanda Ailulola LPN Meetings Our Southern New England chapter meets on the MA and RI state line at Cardi s Furniture Community Room for regular chapter meetings Free transportation from the MBTA Attleboro station is available call 401 573 2621 to schedule pickup Cardi s is located directly off of exit 1 on I 95 There is plenty of free and handicap parking The building is wheelchair accessible and has elevators located in the front and back of the building Email group leader or call for details Website https www facebook com groups DysautonomiaDivasandDudesNE Email Group mailto DysautonomiaDivasandDudesNE groups facebook com In The News Be brave Give yourself or someone you love a gift to support and inspire Gorgeous bracelets necklaces earrings even scarves all engraved with the words be brave So many products to choose from in so many colors and styles These beautiful accessories are a reminder to be brave something we all need from time to time Best of all 10 from the sale of every bravelet goes directly to DINET to help us continue our mission to support and educate Find your special style and support DINET Buy one or two today Visit DINET s online kiosk on the Bravelets page at www bravelets com bravepage dysautonomia information network dinet Volunteer Opportunities at DINET We re looking for readers on our forum DINET is looking for volunteers to help us keep the forum a positive experience for its 4 500 members and growing Readers are responsible for viewing posts and material If you are interested in becoming a Forum Reader please contact us to complete a volunteer application We look forward to hearing from you Contact dinetandforuminfo dinet org Do you have a passion for the written word DINET s quarterly newsletter has room for a few new writers Applicants do not need to have professional writing experience but do need solid language and grammar skills This is a wonderful opportunity to flex your creative muscles and provide information and support to the dysautonomia community If you are interested in joining our team please contact webmaster dinet org An application and at least 2 writing samples will be required Studies Brain fog inflammation and obesity key aspects of neuropsychiatric disorder improved by luteolin From Frontiers in Science Brain fog is a constellation of symptoms that include reduced cognition inability to concentrate and multitask as well as

    Original URL path: http://www.dinet.org/index.php/information-resources/support-groups (2016-04-26)
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  • POTS Overview
    even meals can exacerbate symptoms Grubb Kanjwal Kosinski 2006 Research shows that POTS patients quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease Benrud Larson Dewar Sandroni Rummans Haythornthwaite Low 2002 Twenty five percent of people with POTS are disabledand unable to work Goldstein Robertson Esler Straus Eisenhofer 2002 Most patients will have to make some lifestyle adjustments to cope with this disorder It was once estimated that nearly 500 000 Americans had POTS which made standing up a challenge Robertson 1999 However with research advances and growing physician education the number of people found to have POTS symptoms is steadily rising It is now estimated that one out of every hundred teens has POTS Fischer 2007 POTS patients tend to be between the ages of 15 and 50 Grubb McMann 2001 p 65 Women are 5 times more likely to develop POTS than men Grubb McMann 2001 p 65 POTS does run in some families The onset can be sudden or gradual The quantity and severity of symptoms varies from day to day There are treatments for POTS symptoms which can be tailored to each individual patient especially if an underlying cause is discovered Researchers are attempting to identify and treat the mechanisms and causes of POTS Studies show that most patients will eventually be able to stand up with fewer symptoms Low 2000 Most people with POTS can look forward to experiencing improvement with proper treatment POTS Symptoms POTS Detection POTS Research References 1 Benrud Larson L M Dewar M S Sandroni P Rummans T A Haythornthwaite J A Low P A 2002 June Quality of life in patients with postural tachycardia syndrome Mayo Clinic Proceedings 77 531 537 Full text http www mayoclinicproceedings com inside asp AID 112 UID 2 Brunner L S Suddarth D S 2000 Assessment of cardiovascular function In S C Smeltzer B G Bare Eds Brunner and Suddarth s textbook medical surgical nursing pp 532 563 Philadelphia PA Lippincott Williams and Wilkins 3 Fischer P 2007 Postural orthostatic tachycardia syndrome Mayo Clinic Podcast http www podcastingnews com details www mayoclinic org rss heart podcast xml view htm 4 Goldstein D Robertson D Esler M Straus S Eisenhofer G 2002 Dysautonomias clinical disorders of the autonomic nervous System Ann Intern Med 137 753 763 Full Text 5 Grubb B P 2000 July Orthostatic intolerance National Dysautonomia Research Foundation Patient Conference Minneapolis Minnesota 6 Grubb B P 2002 October The heterogeneity of symptoms related to dysautonomia Symposium conducted at the meeting of the National Dysautonomia Research Foundation Northwest Ohio Support Group Toledo Ohio 7 Grubb B P Kanjwal Y Kosinski D J 2006 The postural tachycardia syndrome A concise guide to diagnosis and management J Cardiovasc Electrophysiol 17 108 112 8 Grubb B P McMann M C 2001 The Fainting Phenomenon Understanding why people faint and what can be done about it New York Futura Publishing Company 9 Low P A 2000 July Orthostatic intolerance National Dysautonomia Research

    Original URL path: http://www.dinet.org/index.php/information-resources/pots-place/pots-overview (2016-04-26)
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