Jump to content

edriscoll

Admin
  • Content Count

    144
  • Joined

  • Last visited

Everything posted by edriscoll

  1. We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Question from member FIONA: I have been recently diagnosed with Dysautonomia following many years of periodic symptoms. I don’t fit into any specific category at the moment although I also suffer from
  2. We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Question from member FIONA: I have been recently diagnosed with Dysautonomia following many years of periodic symptoms. I don’t fit into any specific category at the moment although I also suffer from
  3. Meet the woman behind the Survey Sunday feature on DINET's Facebook page. Lauren also is one of the volunteers posting articles about living with dysautonomia and chronic illness. Meet one of DINET's most valued volunteers. Lauren lives in Cleveland, OH with her wonderful parents and Goldendoodle, Riley. She loves cooking, baking, crafting and making metal jewelry in her spare time. When she was little, she was always having health issues that would come and go randomly and cause lots of fatigue. Her mom kept pushing for an answer after going to countless specialists. Finally, when sh
  4. Meet the woman behind the Survey Sunday feature on DINET's Facebook page. Lauren also is one of the volunteers posting articles about living with dysautonomia and chronic illness. Meet one of DINET's most valued volunteers. Lauren lives in Cleveland, OH with her wonderful parents and Goldendoodle, Riley. She loves cooking, baking, crafting and making metal jewelry in her spare time. When she was little, she was always having health issues that would come and go randomly and cause lots of fatigue. Her mom kept pushing for an answer after going to countless specialists. Finally, when sh
  5. I'm so sorry to hear you are going through all of that. Medical issues can be so overwhelming and especially so when there are multiple issues going on at the same time. I hope you get some relief soon and some answers. Hospitals all have social work departments that have patient advocates that can really help you speak to the doctors and sort out what the priorities should be for your care. They can also help with things like rides to appointments. If you haven't done so, you may want to call the hospital where you are having your testing done or where the majority of your doctors are an
  6. Dysautonomia is an umbrella term used to describe a collection of disorders related to the dysfunction of the Autonomic Nervous System (ANS). So to understand dysautonomia, it begins with understanding how the ANS works. The autonomic nervous system regulates certain processes that occur automatically within the body, without a person's conscious effort to make them work. These processes are things like breathing, heart rate, and blood pressure. When the autonomic nervous system doesn't work correctly (dysfunctions) it can affect any body part or process. These disorders may be r
  7. Dysautonomia is an umbrella term used to describe a collection of disorders related to the dysfunction of the Autonomic Nervous System (ANS). So to understand dysautonomia, it begins with understanding how the ANS works. The autonomic nervous system regulates certain processes that occur automatically within the body, without a person's conscious effort to make them work. These processes are things like breathing, heart rate, and blood pressure. When the autonomic nervous system doesn't work correctly (dysfunctions) it can affect any body part or process. These disorders may be r
  8. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. COVID-19 Research: New research study conducted by Dr. Blitshteyn to examine the impact of COVID-19 on patients with pre-existing neurological disorders in
  9. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neurosci
  10. Autonomic nerve disorders (dysautonomia) refer to disorders of the autonomic nervous system (ANS) function. Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, and cognitive impairment. (1. Mayo Clinic, Autonomic Nerve
  11. Autonomic nerve disorders (dysautonomia) refer to disorders of the autonomic nervous system (ANS) function. Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, and cognitive impairment. (1. Mayo Clinic, Autonomic Nerve
  12. edriscoll

    Snyder

    Assistant Professor of Pediatrics Mailing address: P.O. Box 208064 New Haven, CT 06520-8064
  13. Editor's note: Below is a story submitted by a member for our site. If you would like to share your story of the caregiving experience, please email webmaster@dinet.org ********************************************************************************** Rose's Story I have been a caregiver and I have had caregiving for myself. The experience from both sides has required effective communication. When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer. I was the closest to my mom both emotionally and physically so it was a natural fit f
  14. Editor's note: Below is a story submitted by a member for our site. If you would like to share your story of the caregiving experience, please email webmaster@dinet.org ********************************************************************************** Rose's Story I have been a caregiver and I have had caregiving for myself. The experience from both sides has required effective communication. When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer. I was the closest to my mom both emotionally and physically so it was a natural fit f
  15. I'm sorry about that. The post was supposed to expire, that was my error. The questionnaire ended 8/31. But we do expect to have a few other phases to this project over time, so please check back with us. Again, I apologize for the error.
  16. All of Us Research Program - Champion Partnership. The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U.S. The program focuses on Precision Medicine, which means (in a severely condensed definition), not all people are created the same, so why should the approach to our health be the same? Why is that important to dysautonomia patients? Dysautonomia is a rare disorder that encompasses many variables - which type of dysautonomia? Is it a primary disorder or secondary to MS or another illness? Ar
  17. All of Us Research Program - Champion Partnership. The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U.S. The program focuses on Precision Medicine, which means (in a severely condensed definition), not all people are created the same, so why should the approach to our health be the same? Why is that important to dysautonomia patients? Dysautonomia is a rare disorder that encompasses many variables - which type of dysautonomia? Is it a primary disorder or secondary to MS or another illness? Ar
  18. October is Dysautonomia Awareness Month NOTE: If you are a part of a support group or have contacts within the medical community and would like to receive printed materials as handouts or information to pass on please contact webmaster@dinet.org We will do our best to accommodate all requests. We support your efforts! Here is what DINET has going on this month and going forward: NIH All of Us Research Program - Champion Partnership. The National Institute of Health has an ambitious research program underway to gather health information from 1 million or more people in the U
  19. Hi all, thank you so much for all you are doing to help with raising awareness for dysautonomia. It truly takes all of us bringing it to the forefront of people's minds - including and most importantly, the minds of the medical community. Please check back to the site and our Facebook page to see DINET's latest announcements and the efforts from other members to raise awareness for dysautonomia. I will include the info listed here on our Member Awareness page launching this week. If you know of any other members who would like to share their efforts with us, please ask that they emai
  20. Please note: Thank you to all who took the time to answer our questionnaire. This phase of the pilot survey ended 8/31/2018. The data is being studied by Chelsea Goldstein and Miami University. We greatly appreciate your cooperation and interest in helping us understand the DINET community and your experiences living with dysautonomia. DINET is asking members to take a few minutes to answer a questionnaire aimed at investigating how age affects our diagnosis and possibly treatment of dysautonomia. https://www.surveymonkey.com/r/PRXLZ7L The questionnaire is a follow up to the i
  21. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int he psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important researc
  22. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int he psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important researc
  23. Dysautonomia through the ages by Chelsea Goldstein Self-care, why it deserves a spot at the top of your to-do list by Amy Keys Eating disorders and dysautonomia by Mona Hussein Meet the Member: Caryn's Story by Chelsea Goldstein I've changed my mind. I don't want to accept "acceptance" by Trudi Davidoff How older chronically ill folks can help younger ones:; Age-specific tools for managing illness by Missy Milton Medical Q & A - Your questions answered by DINET's Medical Advisors Updated Research Information for Dysautonomia and Related Chronic Illnesses Updated Open Recruitment Stud
  24. Dysautonomia through the ages by Chelsea Goldstein Self-care, why it deserves a spot at the top of your to-do list by Amy Keys Eating disorders and dysautonomia by Mona Hussein Meet the Member: Caryn's Story by Chelsea Goldstein I've changed my mind. I don't want to accept "acceptance" by Trudi Davidoff How older chronically ill folks can help younger ones:; Age-specific tools for managing illness by Missy Milton Medical Q & A - Your questions answered by DINET's Medical Advisors Updated Research Information for Dysautonomia and Related Chronic Illnesses Updated Open Recruitment Stud
  25. We welcome your letters to DINET's Medical Advisors. Please be aware that the information provided is not meant to be a diagnosis or medical advice. It is provided to give you background information to discuss with your medical team and general information to keep you well informed about dysautonomia disorders. If you have a question for our advisors, please send to webmaster@dinet.org Q: Is there any connection between autonomic dysfunction occurring after the gallbladder is removed. I’ve noticed at several of my support groups that there are a number of young people who have had t
×
×
  • Create New...