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The Neuropathy Association and Dysautonomia International Co-Host "Dysautonomia--When the Autonomic Nerves Malfunction" Facebook Chat

Updated November 18th, 2013

Nearly 1,000 people joined The Neuropathy Association and Dysautonomia International for an informative Facebook Chat on October 29th to discuss and get a better understanding for the diagnosis, care, and treatment of people with dysautonomia. In addition, upwards of 4,000 have already read the conversation threads from the Chat and joined in the conversations over the days that followed, sharing their own experiences with one another. Our guest hosts -- Dr. Svetlana Blitshteyn (University at Buffalo School of Medicine and Biomedical Sciences); Dr. Laurence Kinsella (Saint Louis University Medical School); Dr. Paola Sandroni (Mayo Clinic); and Lauren Stiles, Esq. (Dysautonomia International) -- fielded questions posed by the Chat participants on a wide range of topics, offering answers, insights, and resources. 

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Dysautonomia is an umbrella term used to describe various conditions that can cause a malfunction of the Autonomic Nervous System (ANS). The ANS includes the peripheral autonomic nerves that control several vital body functions -- which we do not consciously think about -- including blood pressure, heart rate, digestion, dilation and constriction of the pupils of the eye, sexual function, and bowel and bladder emptying.

When the digestive system is affected symptoms may include constipation, diarrhea, feeling full with only a few bites after eating, and vomiting of undigested food. When the cardiovascular system is affected, symptoms may include blood pressure changes with position causing dizziness when standing and shortness of breath with activity and/or exercise. When the urinary tract is affected, symptoms may include difficulty beginning to urinate, feeling of incomplete bladder emptying, and urinary incontinence. Other symptoms may include sexual dysfunction, abnormal sweating, and increased sensitivity to warm and cold temperatures, or changes in temperature.  The symptoms of dysautonomia are diverse because the ANS controls so many functions of the body.

Autonomic disorders are difficult to diagnose because they can cause such a wide array of symptoms, which makes them even more complex to manage. Working with a health care professional who specializes in autonomic neurology is critical, as is recognizing and managing the symptoms early in the disease process.This Facebook Chat offers participants a unique opportunity to learn about -- and discuss -- the various types of dysautonomia.

Our guest hosts fielded questions posed by the Chat participants, while also discussing:

- The importance of recognizing the symptoms early;

- How various forms of dysautonomia are diagnosed;

- Determining the underlying causes of autonomic neuropathy if possible;

- General treatment strategies;

- Resources that are available to individuals living with dysautonomia;

- Ways to improve access to care and quality-of-life; and,

- The importance of living your best life even if you have a form of dysautonomia.

Svetlana Blitshteyn, M.D. is a Clinical Assistant Professor at the University at Buffalo School of Medicine and Biomedial Sciences.  She is also the Director of the Dysautonomia Clinic, a private practice in Williamsville, NY focused on the diagnosis and treatment of disorders of the autonomic nervous system. She has published articles related to dysautonomia during pregnancy, migraines, and post-vaccination onset of autonomic dysfunction, and co-authored a popular patient-oriented book, “POTS: Together We Stand, Riding the Waves of Dysautonomia.” Dr. Blitshteyn serves on the Medical Advisory Board of Dysautonomia International.

Laurence Kinsella, M.D. is a Professor of Neurology at Saint Louis University School of Medicine. He completed his neurology residency at Brown University and a neuromuscular disease and electromyography fellowship at Columbia University. He is board certified in autonomic medicine. He formerly served as an Assistant Professor of Neurology at Case Western Reserve University in Cleveland and as Chief of Neurology at Mt. Sinai Hospital in Cleveland, Ohio. He has published and presented internationally. Dr. Kinsella is a member of The Neuropathy Association's Medical Advisory Committee.

Paola Sandroni, M.D., Ph.D. is a Professor of Neurology at Mayo Clinic Rochester. She graduated from Milan Medical School in Italy. She joined the staff at Mayo after completing residency in Neurology, fellowship in peripheral nerve disorders and a pain medicine scholarship. She is the Director of the autonomic laboratories at Mayo Clinic and is actively involved with clinical, research and education. Dr. Sandroni has authored over 100 peer reviewed papers and multiple book chapters.  She is the Chair of the Autonomic Section of the American Academy of Neurology and a member of the Medical Advisory Board of Dysautonomia International.

Lauren Stiles, Esq. is the President of Dysautonomia International, a 501(c)(3) non-profit organization dedicated to improving the lives of individuals living with dysautonomia through medical research, advocacy, education and patient empowerment.  She is a marine biologist and lawyer by training, but became a dysautonomia advocate by circumstance.  After two very frustrating years of misdiagnoses, Lauren was finally correctly diagnosed with autonomic neuropathy caused by an autoimmune disease.  Prior to launching Dysautonomia International, she authored the POTSgrrl blog and contributed a chapter to “POTS: Together We Stand, Riding the Waves of Dysautonomia.”

A special thanks to our guest hosts for giving their time and expertise to speak with our community!

P.S.: If you do not use Facebook:

- You can still access the Chat "live" by visiting The Neuropathy Association's Facebook page, but you will not be able to join the conversation by posting comments. View the Neuropathy Association's Facebook page!

- You can read a transcript of the highlights from the Chat that will be published afterwards in the coming weeks. Sign up to receive your free copy of the transcript by email!


 

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