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Found 23 results

  1. By: Chelsea Goldstein, Dysautonomia Information Network Perhaps, you've worked with your boss to make accommodations for your health at your job. You've been open with coworkers about your dysautonomia, and you've developed a handbook of pretty clever tricks to get through your workdays. Maybe you've even changed jobs in an effort to find a career that doesn't make you sick. Even still, you've used up all of your PTO, you can barely function when you get home from work, and weekends are consumed by trying to "heal" as much as possible so you can do it all over again next week. If thi
  2. By: Chelsea Goldstein, Dysautonomia Information Network Homeschool, distance learning, remote education, e-learning, and tele-education are but a few terms to describe the various structures of schooling that can be done from home (either full-time or part-time) with the assistance of technology. To minimize confusion, we will refer to all of these terms as distance learning for the rest of this article. If you or your child lives with dysautonomia, you may have been engaged in distance learning for some time. You may also have a story of your tireless battle with a school system to
  3. by Chelsea Goldstein, Dysautonomia Information Network Mental health conditions, like depression, are often difficult to talk about because of their stigma. If you live with dysautonomia and depression you may be even more hesitant to talk about your mental health needs out of fear that your dysautonomia will be dismissed as "all in your head." Unfortunately, this can lead to improper treatment of dysautonomia, depression, or both. However, we rarely discuss how it is normal to live with BOTH depression and dysautonomia. In fact, research demonstrates that about 25 to 33% of people
  4. By: Chelsea Goldstein, Dysautonomia Information Network If you are working and managing your chronic illness stop now. Take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. It is difficult for anyone to have a career and manage the responsibilities of life such as family, household tasks, and self care. Throw chronic illness into that mix, and anyone who can balance their health and a career is a superhero. Or magician. Maybe a bit of both. If you aren't working, but are managing your chronic illness, remember that taking care of your health is
  5. By: Chelsea Goldstein, Dysautonomia Information Network Living with chronic illness often feels like one big Catch-22. For example, we need to work to survive, but working can be so tough on our bodies that it causes precarious health. Many of us have left jobs we love as a result, but it's also in these moments that we need our reliable income the most to cover our medical bills and other expenses. If you can relate to this, you've probably had a roller coaster of a career path - like me - as you try to figure out just what job, exactly, will work with your body. One option is to co
  6. By: Chelsea Goldstein, Dysautonomia Information Network If you have ever worked while living with a hidden chronic illness, you have probably struggled over whether or not to share your illness with your boss and coworkers. You've likely asked yourself questions such as: Should I tell my boss about my illness? Should I tell my coworkers? When should I tell them? Will I be treated differently once they know? These are big questions, and there is not one, correct way to answer them. The choice to disclose your health condition(s) at work is a personal one, and only you can decide the
  7. 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
  8. 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
  9. Age specific tools for managing chronic illness I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else. In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthoo
  10. I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore. I began telling myself that I was content. That an ideology of ‘
  11. At first glance, Caryn is living an enviable kind of life: she is 56 years old, living in South Florida and is the Director of Imaging Services for a national radiology group. In the short time, I spent talking with Caryn, her positive disposition and tremendous strength were evident through all that she said. So, while she certainly seems to be living a great life, I suspect that not many people know how hard Caryn has fought to build this life or how much she continues to overcome to achieve it. At age fifty, she was diagnosed with neurocardiogenic syncope (NCS) after a harrowing medical ba
  12. Dysautonomia commonly develops as a complication of a primary illness or is seen in patients with multiple disorders. These scenarios add a layer of complexity to a patient’s diagnostic journey, as well as their treatment plan. When one of those illnesses is an eating disorder, the complexities can be significantly magnified. Eating disorders, which include bulimia nervosa and anorexia nervosa, are defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as follows: "Feeding and eating disorders are characterized by a persistent disturbance of eating or eating-relate
  13. edriscoll

    EDS Why Zebras?

    Why are EDS patients called Zebras? Patients with EDS frequently call themselves Zebras, why? According to the Ehler's Danlos Society, it originated from something taught to medical students about diagnosing patients - "When you hear hoofbeats behind you, don't expect to see a zebra" In other words, look for the most common and usual, not the most unusual when diagnosing a patient. The Zebra became the symbol for EDS patients because, as with most dysautonomia disorders, it takes years to gain a diagnosis because the patient looks too "normal" or seems too young to have so many ail
  14. edriscoll

    EDS Overview

    What is Ehler's Danlos Syndrome? EDS is a connective tissue disorder caused by various defects in the synthesis of collagen. Along with Hypermobility Spectrum Disorder (HSD), they are a class of genetic disorders, present at birth but unrecognized for years. There are 13 different types of EDS. Studies have found that EDS is associated with dysautonomia, usually in the form of POTS and OI. Recent findings report 80% of Hypermobility EDS patients have POTS and 33% OI. In addition to the symptoms associated with dysautonomia, some common symptoms of EDS are joint laxity, sof
  15. The University of Alberta and McGill University released their findings for a new therapeutic agent that may hold the potential for the prevention of MS. In the new study, according to the synopsis published in Medical News Today, the researchers examined tissues from donated human brains. They found that the brains of people with MS had very high levels of a protein called calnexin compared with the brains of people who did not have MS. The team then used mice that had been bred to model human MS to examine the influence of calnexin in living creatures. The study authors wer
  16. Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen. The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon he
  17. “It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve. My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was e
  18. DINET member name: Rachel Friemel Rachel's hometown: Davenport, IA Diagnosis: Dysautonomia Website: http://www.rachelfriemel.com and https://www.saatchiart.com/LittleRae In Rachel's words.... I am a digital and fine artist as well as a photographer and graphic designer. I started showing symptoms of dysautonomia during my senior year of college while I was working on my Honors art show. My skills are versatile, so depending on what symptoms are flaring up, I can still work on creating pieces of art. Screen Printing and Digital art are the most "Spoonie Friendly" mediums fo
  19. DINET member name: Jayne The Daily Manic Jayne's hometown: Geelong, Victoria, Australia Diagnosis: EDS (Hypermobility type) and Dysautonomia Blog: www.thedailymanic.com website: https://thechangeplace.com.au/ On ebay: https://m.ebay.com/itm/Freedom-to-Choose-Online-Life-Coaching-Program/182862702659?hash=item2a93776843:g:6XcAAOSworNaCTVp In Jayne's words..... I have been diagnosed with Ehlers Danlos Syndrome (Hypermobility Type) and Dysautonomia. Dysautonomia has been the thing that has forced me to considerably change the way I live and work. After having gone through m
  20. DINET member name: Cassandra Pacquin Cassandra's hometown: Cool Springs, NC Diagnosis: EDS, Mast Cell, Congestive Heart Failure email: juscass86@gmail.com website: Eagles Wings Studio https://www.facebook.com/EaglesWingsStudioNC/ In Cassandra's words..... Hello!! My name is Cassandra and I'm an EDS Trifecta Zebra with Dysautonomia and Mast Cell as well as congestive heart failure. I'm a chef/owner of our family artisan granola bakery business. Over the past year I've had to refocus my energy and talents due to my limitations and have gone back to my original loves of mixed
  21. Dysautonomia means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies. Diagnosis frequently requires a specialist familiar with autonomic dysfunction and the various disorde
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