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Found 10 results

  1. 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
  2. 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
  3. By: Chelsea Goldstein, Dysautonomia Information Network One of the many difficult aspects of living with dysautonomia is that very few products are designed specifically for our needs. The medications we take are usually considered "off-label" for dysautonomia, we use hydration products designed for athletes or children, and assistive technology is often created with other populations in mind. I will continue to dream of, and advocate for, a world where people with dysautonomia have a voice in the creation of technologies that support our everyday lives. In the meantime, this articl
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. NOTE from DINET: This article is page 1 of a packet focused on children & teens living with POTS. This information is available on our site and also as pdfs that can easily be emailed, printed, or printed & copied. This information can be used as a handout for teachers, coaches, family members and anyone else who is in regular contact with your child yet doesn't understand what they or you are going through living with POTS. We sincerely hope it helps. If you know a child or teen who has been diagnosed with something called POTS, you may be scratching your head. You're not al
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