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janiedelite

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Everything posted by janiedelite

  1. We would love to pass on dysautonomia-related questions to our medical advisors. These questions and answers will be published in our next newsletter. If you would like to submit a question, please READ ALL THE INSTRUCTIONS FIRST. Start by doing the following: - Do not ask for medical advice. Please don't ask for help for your specific situation. We cannot forward those questions to our medical advisors because they aren't your personal physicians. These questions put them at legal risk. We can forward questions that are about dysautonomia in general. For example, it would be acceptable to ask "Can menopause and hot flashes worsen POTS symptoms? Why or why not?," instead of "I am in menopause and have POTS. Do you think my hot flashes are making my POTS symptoms worse?" Please read the recent newsletter for examples of acceptable questions. - Please submit your question with your first name and state of residence. - Please submit your questions to janie@dinet.org Occasionally, the doctors are unable to answer a question from one of our DINET members. You may not see your question answered. Thank you!
  2. We would love to pass on dysautonomia-related questions to our medical advisors. These questions and answers will be published in our next newsletter. If you would like to submit a question, please READ ALL THE INSTRUCTIONS FIRST. Start by doing the following: - Do not ask for medical advice. Please don't ask for help for your specific situation. We cannot forward those questions to our medical advisors because they aren't your personal physicians. These questions put them at legal risk. We can forward questions that are about dysautonomia in general. For example, it would be acceptable to ask "Can menopause and hot flashes worsen POTS symptoms? Why or why not?," instead of "I am in menopause and have POTS. Do you think my hot flashes are making my POTS symptoms worse?" Please read the recent newsletter for examples of acceptable questions. - Please submit your question with your first name and state of residence. - Please submit your questions to janie@dinet.org Occasionally, the doctors are unable to answer a question from one of our DINET members. You may not see your question answered. Thank you!
  3. Do you have a passion for educating, encouraging, and writing about dysautonomia? Would you like to give back to the dysautonomia community by writing for DINET? We would love to hear from you! DINET's volunteer needs are always changing, but here we always have a need for newsletter writers. If you would like to see the type of articles we include in our newsletter, look at a recent newsletter: http://dinet.org/ind...ces/newsletters If you would like to volunteer for DINET, please email Janie at Janie@dinet.org Thank you!
  4. We would love to pass on dysautonomia-related questions to our medical advisors. These questions and answers will be published in our next newsletter. Feel free to review a recent newsletter and the Doctor Q&A column: http://dinet.org/ima..._Newsletter.pdf If you would like to submit a question, please do the following: - Do not ask for medical advice. Please don't ask for help for your specific situation. We cannot forward those questions to our medical advisors because they aren't your personal physicians. These questions put them at legal risk. We can forward questions that are about dysautonomia in general. For example, it would be acceptable to ask "Can menopause and hot flashes worsen POTS symptoms? Why or why not?," instead of "I am in menopause and have POTS. Do you think my hot flashes are making my POTS symptoms worse?" Please read the recent newsletter for examples of acceptable questions. - Please submit your question with your first name and state of residence. - Please submit your questions to janie@dinet.org Thank you, we would love to hear from you!
  5. DINET needs a Newsletter Designer! This volunteer would be responsible for creating our newsletter by assembling articles into an appealing newsletter format. If you are interested, please email Janie at janie@dinet.org. Thank you!
  6. DINET is looking for a Newsletter Designer. This person would be responsible for receiving each quarter's newsletter articles and formatting them into a professional-looking newsletter. Please email janie@dinet.org if interested. Thank you!
  7. DINET needs members who would be willing to share their dysautonomia story for our Meet the Member newsletter column. These stories are VERY inspirational to others, as we can all relate to the struggles that accompany getting diagnosed, properly treated, and coping with dysautonomia. Wherever you are in your dysautonomia journey, you are able to encourage others! If you are interested, please contact Janie at Janie@dinet.org Thank you!
  8. DINET needs writers for our quarterly newsletter! Our writers can either contribute regularly, writing an article each quarter. Or, you can contribute articles as you are able. Our newsletter articles are about any topic related to dysautonomia. They can be educational or encouraging, personal reflections, or research-based. If you are interested, please email Janie at janie@dinet.org Thanks!
  9. You can ask a question of our medical advisors by sending your question to janie@dinet.org. Be sure to include your name, state, and an email address in your email. Sometimes our advisors will contact the person who submitted the question directly. For those who aren't familiar with this service, I should mention that these questions and answers are a part of our Doctor Q & A column in DINET's newsletter. Please do not ask for medical advice, or for advice specific to your own health issues. They can't give you advice specific to your health, so I am not able to submit questions of this nature to our advisors. But our medical advisors are great resources for more general questions regarding dysautonomia (questions that would benefit other patients as well). Also, the medical advisors can choose to pass on answering any particular question, so your question may not appear in our next newsletter. Here is our most recent newsletter, with the Doctor's Q & A column: http://dinet.org/2013%20Fall%20Newsletter.pdf
  10. Would you like to inspire, educate and encourage others by sharing about your dysautonomia journey? We need DINET members who are willing to be the focus of our Meet the Member column in the newsletter. You can share about your life before dysautonomia, your journey to diagnosis, finding treatment, finding a doctor, recovery, what motivates you, etc. You don't need to share your name if you'd rather be anonymous. Feel free to look over Meet the Member articles in past newsletters: http://dinet.org/2013Winter.pdf http://dinet.org/Summer%202012%20Newsletter.pdf If this interests you, please email janie at janie@dinet.org, or send me (Thankful) a PM.
  11. Would you like to inspire others by sharing your dysautonomia journey in DINET's Meet the Member column? Please send me (Thankful) a PM, or an email at janie@dinet.org, and we'll put your story in our upcoming fall newsletter. Thanks!
  12. You can ask a question of our medical advisors by clicking on the link below. Please read all of the instructions prior to submitting your question. Be sure to include your name, state, and an email address. Here is the link: http://www.dinet.org/q&a.htm For those who aren't familiar with this service, I should mention that these questions and answers are a part of our Doctor Q & A column in DINET's newsletter. These medical advisors can't provide medical advice. They can't give you advice specific to your health. But they are great resources for more general questions regarding dysautonomia (questions that would benefit other patients as well). Also, the medical advisors can choose to pass on answering any particular question, so your question may not appear in our next newsletter. Here is our most recent newsletter, with the Doctor's Q & A column: http://dinet.org/201... Newsletter.pdf
  13. Thank you, Rachel! I'm sure you didn't plan on suddenly investing hours of time and precious energy into getting the forum back online this week. I hope you recover quickly from all of your efforts!!!
  14. Are you passionate about a dysautonomia topic? Would you like to encourage and educate others in the dysautonomia community? We could a couple more articles for our October newsletter. If interested, email Janie at Janie@dinet.org for more information.
  15. You can ask a question of our medical advisors by clicking on the link below. Please read all of the instructions prior to submitting your question. Be sure to include your name, state, and an email address. Here is the link: http://www.dinet.org/q&a.htm For those who aren't familiar with this service, I should mention that these questions and answers are a part of our Doctor Q & A column in DINET's newsletter. These medical advisors can't provide specific medical advice, but they are great resources for more general questions regarding dysautonomia (questions that would benefit other patients as well). Also, the medical advisors can choose to pass on answering any particular question, so your question may not appear in our next newsletter. Here is our most recent newsletter, with the Doctor's Q & A column: http://dinet.org/2013Winter.pdf
  16. We still need someone to write for the Parenting Corner. Thanks!
  17. DINET is adding a new regular column to our quarterly newsletter: The Parenting Corner. This column will focus parenting when either you, your spouse, or one of your children has dysautonomia. We need someone to head up this column. This person may want to write about their own experiences as a parent dealing with dysautonomia, but this new writer may also want to use the forum to get ideas and/or suggestions from other DINET members about their parenting experiences and advice. Topics could include ideas such as "Going Back to School," "Helping with Homework," "IEPs and Other School Resources," or "Caring for an Infant While Struggling with Dysautonomia." We are aiming to publish our newsletter quarterly, so this writer will need to be willing to submit a new article every few months. We also need someone who has good grammar and spelling skills. I'm super excited about this column since I'm in the midst of raising our 15-month-old and can totally related to these challenges! If you are interested in heading up this column, please email me at Janie@dinet.org
  18. For those who aren't familiar with this service, I should mention that these questions and answers are a part of our Doctor Q & A column in DINET's newsletter. These medical advisors can't provide specific medical advice, but they are great resources for more general questions regarding dysautonomia (questions that would benefit other patients as well). Also, the medical advisors can choose to pass on answering any particular question, so your question may not appear in our next newsletter. Here is our most recent newsletter, with the Doctor's Q & A column: http://dinet.org/2013Winter.pdf
  19. You can ask a question of our medical advisors by clicking on the link below. Please read all of the instructions prior to submitting your question. Be sure to include your name, state, and an email address. Here is the link: http://www.dinet.org/q&a.htm
  20. We are recruiting participants aged 14-29 years old for a study of postural vasovagal syncope (VVS, postural faint) and neuropathic postural tachycardia syndrome (POTS). Exact mechanisms of illness have remained elusive although our past work shows that with upright posture blood is excessively relocated from the central pool to the splanchnic vasculature in both VVS and neuropathic POTS. This occurs because blood vessel contraction (vasoconstriction) is impaired when upright. We hypothesize that impairment occurs because of excessive production of nitric oxide (NO) which reduces the ability of the nerves to produce vasoconstriction. If you choose to participate, we will perform a type of testing called lower body negative pressure (LBNP) during which we use a vacuum to redistribute blood to your legs while you remain supine. This simulates many findings of upright postural stress. We will perform simple noninvasive tests. On other days we will also use a technique called intradermal microdialysis in which several tiny tubes are placed in the uppermost layer of the skin, while we simultaneously measure blood flow. Two 3mm biopsy samples will be obtained from the skin of your calf. In addition, we will be administering several drugs - L-NMMA, Phenylephrine, and Sodium Nitroprusside through an IV placed in your arm and combine this with LBNP, along with microneurography that measures Muscle Sympathetic Nerve Activity (MSNA) using an acupuncture-like needle placed in a nerve behind your knee. Testing will take place over 5 days and you will be reimbursed $150 per day. Further details of the research and representative consent forms can be found on our web-site, syncope.org Or at our listing on Clinicaltrials.gov - the direct link is http://clinicaltrials.gov/ct2/show/NCT01791816?term=julian+m.+stewart&rank=1 If interested, please reply to: Courtney Terilli, Research Coordinator The Center for Hypotension Department of Pediatrics 19 Bradhurst Avenue, Suite 1600 South Hawthorne, New York 10532 courtney_terilli@nymc.edu; Telephone 914-593-8888
  21. If you have a question you'd like to see answered in the next edition of the newsletter, you can submit your question here: http://www.dinet.org/q&a.htm Please keep in mind, our medical advisors are not allowed to provide medical advice specific to your situation. Also, not every question is answered by our advisors. We'd like to hear from you!
  22. DINET needs volunteers who would like to write for the newsletter. If you enjoy writing about dysautonomia and have good spelling and grammar, please help us out! Are you interested in research? We need help writing our Research in Review column. Do you like reading the stories about other dysautonomia patients? We need a Personal Story Writer who will interview DINET members and write a short bio each newsletter. We also need writers who are interested in writing about general dysautonomia topics. Examples of past articles include Aquatic Therapy and Surviving the Holidays with Dysautonomia. For ideas and for examples of our Research in Review and Personal Story columns, see our last newsletter: http://dinet.org/Sum... Newsletter.pdf Send me (Thankful) a PM if you are interested! Thanks!
  23. http://www.mc.vanderbilt.edu/reporter/index.html?ID=12580 Enjoy!
  24. Oh Corina, I'm saying a prayer that it will work out for you to stay on the octreotide. I know it's been such a life-changing medication for you. Sorry you have to go through the anxiety of wondering what your prescription coverage will look like.
  25. He is looking for a doctor that he could provide suggestions to for treating you, who would be local and easy for you to see regularly, and who would be willing to collaborate with him for your treatment. Often specialists will do this because the treatments they prescribe have side effects, so you'd need a local doctor to help manage you with the day-to-day details.
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