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  1. DINET will bring the experts to you with 4 speaker sessions about POTS throughout the month of October. Learn more about the disorder, the latest research and treatments, the connection to COVID and a roundtable discussion with professionals about healthcare and the patient doctor connection. Have questions for the doctors? Send your questions now to webmaster@dinet.org Select questions will be answered live during the sessions. Don't miss a chance to get your questions answered by the leading experts in the field. Sessions will premiere live on our YouTube Channel. Subscribe now to the channel so you won't miss a thing. ****************************************************************************** A special thank you to our sponsor Banana Bag Oral Solutions for helping us bring you this speaker series. Banana Bag Oral Solution offers the benefits of IV hydration therapy without the IV. and provides high dose, water soluble, B-Complex Vitamins helping replenish nutrients lost to chronic illness such as POTS. Please visit their site today to learn more about their products. https://www.bananabagdrink.com
  2. The word we have received from our medical advisors here at DINET regarding the vaccination is very much in keeping with what Yogini posted - it is such a new vaccine that there is no data related specifically to the effects on dysautonomia patients. It is a personal choice, but the general consensus is that the common side effects seen with the vaccine are far less medically traumatic than the more severe effects of the virus. Unfortunately there is just too little known about the virus, the vaccine and dysautonomia to give you a definitive answer. Generally the only contraindications for the vaccine are: 1. People younger than 16 years old 2. If you have received COVID antibody or plasma treatment within 90 days of the planned vaccination 3. If you have known allergies to components of the vaccine. You can read about the components at the Vanderbilt University Medical Center site - https://www.vumc.org/coronavirus/known-covid-19-contraindications I'm sorry to say that finding a dysautonomia specialist that would be available for a consultation on short notice would be incredibly difficult, particularly to a new patient. One of our medical advisors, Dr. Blitshteyn at The Dysautonomia Clinic has been following the effects of COVID and is conducting a survey related to the virus. The Rare Disease Clinical Research Network is also conducting a survey related to chronic illness and the effects of COVID. But I don't know of any organizations that are tracking the effects of the vaccine. My personal experience after having both rounds of the Pfizer vaccine was fair. I didn't have any serious reactions. I was incredibly tired for about 24 hours after both. I had very little soreness in my arm, but I did have a headache that was unresponsive to medication and lasted for about 24 hours. I have had a bout of inflammation/edema throughout my body that developed within days of the second vaccine. There is no way of knowing whether this is related to the vaccine or not because I do have issues with edema from time to time. So it may be purely coincidental. But I mention this to make a general point about vaccines. I have experienced flare ups of inflammation and other symptoms after having flu vaccines. There is never proof that the flare is directly tied to the flu vaccine, but I believe it may be because it happens every time I receive one. I also have flares after colds and other viruses, which is a fairly common occurrence for people living with dysautonomia. The people at the highest risk with COVID are people with diminished function of the heart, lungs and kidneys, whether due to illness or age. It has been very difficult for people with serious chronic illnesses to understand why they would not be considered high risk. But the high risk potential is based on the health of the person's organs - not the seriousness of the pre-existing condition. That's why the ranking of a person's risk is made individually by their physician. I don't know if you had your 1st vaccine because of your occupation, age, or because you were considered high risk by your physician. If your doctor considers you a high risk for COVID, then that should be an important factor in your decision whether or not to get the 2nd dose. I discussed my options with my PCP and my cardiologist. Both my physicians felt I was at far greater risk for serious illness if exposed to COVID than any reaction to the vaccine including a dysautonomia flare. So for me the choice was a simple one regardless of any side effects I may have had to endure. I believe you would be better off speaking with a physician that knows your medical history than you would be a specialist that may be able to share data but not help you weigh the risk/benefit of the vaccine for you personally. I wish you the very best.
  3. Interview by Chelsea Goldstein for Dysautonomia Information Network Hi! My name is Savannah and I am 26 years old. I have Postural Orthostatic Tachycardia Syndrome (POTS). I also have Ehlers Danlos Syndrome (EDS), Gastroparesis, Trigeminal Neuralgia, Vocal Cord Dysfunction, and dermatographia. I love to read, paint, knit, color, sing, and pretty much anything else that could be a creative outlet. I accomplished my dream of becoming a nurse, but dysautonomia took that from me. I’m currently an LPN, and I hope for a cure one day so that I can become an RN in labor and delivery. Until then, I work on fulfilling my dream of helping others by spreading awareness of my conditions. At left: Savannah smiling with the bicep pose When were you diagnosed with dysautonomia? I was 21, and it took a little over a year to be diagnosed with dysautonomia because I was sent on a wild goose chase of visiting different doctors, multiple tests, and random symptoms. The diagnosis was relatively quick once I was finally sent to neurology – I believe it was less than a week. Did you have any early signs of dysautonomia before you were diagnosed? I’ve had symptoms my entire life, especially dizziness, headaches, fatigue, blacking out, palpitations, chest pain, and shortness of breath. It definitely got worse after I graduated college and started my nursing job. Did you experience any barriers during your diagnostic process? Yes. My symptoms were always associated with being a dramatic teenage girl. When they got worse after college, doctors didn’t believe me, my boss didn’t believe me, and it even got to the point where my family was questioning whether it was all in my head. Getting my diagnosis was such a relief because even I was starting to believe that maybe I WAS “going crazy.” I started to think that maybe it was anxiety and depression that was causing my symptoms, BUT I fought and fought and I’m so glad that I stuck with my gut. What were your initial reactions when you were diagnosed? I had never heard of dysautonomia before, even being a nurse. I was confused, but so relieved I had a diagnosis to finally make sense of everything I was going through! At right: Savannah lying down with her legs elevated What else would you like to share about your diagnostic process? It is SO important to trust your gut. Your body will let you know that something is wrong, and don’t take no for an answer. You must be your own advocate sometimes, and it is important to remember that no one knows your body better than you do! Write down your symptoms and keep a log of everything you can. It will come in handy. At left: Savannah in a hospital bed What do you do to manage your dysautonomia on a daily basis? I now see an electrophysiologist who helps manage my symptoms, and they prescribed propranolol (a beta blocker) that helps control my heart rate. I also receive saline infusions twice a week and it helps some! With my gastroparesis I can’t drink plain water, so the infusions help both the POTS and gastroparesis. I also have increased my salt intake, try to take everything slow, rest when I need to (including napping because I absolutely crash in the afternoons), avoid eating big meals, and try to avoid things that may possibly trigger fainting episodes. Even still, I’m not always lucky enough to avoid them. What is the most difficult aspect of living with dysautonomia? Probably the unknown. You never know what is going to happen next with your symptoms, and you must try your best to be as well prepared as possible. Has living with dysautonomia changed your perspective in any way? Absolutely. I don’t take anything for granted now, and I make sure to take time to appreciate all the little things. “Stop and smell the roses” has a new meaning and approach for me. My good days are fantastic, although few and far between, and I take my time to just enjoy doing anything. Getting out of the house now is a big “to do” and before it felt like a chore. At right: Savannah resting with her cat Have you learned anything else from living with dysautonomia? To expect the unexpected. When you’re healthy and you don't have to worry about what tomorrow brings in terms of your health, you don't necessarily feel like there is going to be anything unexpected. When you are living with a chronic illness you must remember that just because you had a good day today, it doesn't mean that you are going to have another good day tomorrow. If you could give fellow Spoonies one piece of advice, what would it be? You must be an advocate for yourself. It's always great to have supportive family and friends but you must be willing to stand up for yourself and your health to get the results, diagnoses, medications, therapies, and anything else you may need to be able to function. This will be a never-ending fight and you must be prepared to be a warrior and fight for yourself! Remember that you are worth fighting for. Have patience, you’ll need it. Try to stay positive. It’s okay to have days when you break down, but the next day stand back up (slowly, because dysautonomia!) and face the day with a new outlook and attitude. We got dys! Encourage people to learn. Spread awareness. Most importantly, take things one day at a time and don’t be afraid to ask for help! At left: Savannah showing her port If you could change one thing about the way people perceive dysautonomia, disability, and other chronic health conditions, what would it be? I wish that others would be willing to learn more about chronic health conditions and disabilities. I also wish that they would take a minute to think about if the circumstances were different - what if they were the ones suffering from the same things that we do? It really is a battle and I don't think that people understand how much we fight. Do you have a favorite quote, song, movie, or book that has helped you? “You have been assigned this mountain so you can show others it can be moved.” “Dying is easy, young man, living is harder.” -Hamilton. I have never heard truer words!
  4. UPCOMING EVENTS: DINET will bring the experts to you with 4 speaker sessions about POTS throughout the month of October. This speaker series will feature sessions from premier doctors and researchers presenting the latest information about POTS, treatments, research and the facts about COVID and post-COVID illness and its connection to POTS. Each Tuesday, Beginning October 12th through November 2nd, join us for a livestream event on our YouTube channel. Subscribe now to the channel to be sure you don't miss a single topic. Do you have questions for the experts? Send them to webmaster@dinet.org Select questions will be answered during the sessions. Learn about the sessions and mark your calendar! A special thank you to our sponsor Banana Bag Oral Solutions for supporting this speaker series and for the many years of partnership and support for the POTS community. We are deeply appreciative. Banana Bag Oral Solution is an oral solution formulated to exceed the standards of the World Health Organization for maximum absorption of water decreasing the need for intravenous therapy. Combining high dose water soluble, full spectrum, B-complex Vitamins (including L-methylfolate & methylcobalamin) with Vitamin C. The Banana Bag Oral Solution helps replenish vital nutrients lost to chronic illnesses, such as POTS. All of these benefits packed into a convenient packet containing no artificial sweeteners, preservatives, dyes or flavors, non-GMO, Gluten Free and Vegan! Learn more about their products at their website - www.bananabagdrink.com Please consider supporting the companies that support the POTS community. - Thank you! *********************************************************************** Ways you can help the Dysautonomia community during Awareness month. Interested in seeing more educational series like this one? Help with a donation to DINET. Your generous donations go towards providing our web services, maintaining our patient forum, providing printed materials, producing original videos, newsletters and multiple special projects to benefit the dysautonomia community and to help educate medical communities about dysautonomia. There is no amount too small to be helpful. You can also choose DINET - Dysautonomia Information Network as your designated charity on smile.amazon.com Every purchase you make includes a donation to our organization and it doesn't cost you any additional money. There are many other ways to donate. Anything you do to support us is greatly appreciated. https://www.dinet.org/get-involved/donate/ Print or email information from our website or request printed materials from us to give to medical professionals in your area, for support groups, for educators - coaches, school nurses and other people who interact with your teenage child and to give to family and friends to help them better understand your struggle. Join or start a local support group or begin a private support group online. Participate in or begin a fundraiser for an organization or project that supports the dysautonomia community. Whatever you choose to do, please reach out and spread the word.
  5. "Being an American" begins with "all men are created equal" which is why as Americans we should all be concerned that all of our citizens have the same rights to health care, as well as the many other basic necessities of life. Thank you for your comment.
  6. Below is a statement from the Board of Directors of DINET and the Administrator of this forum in response to recent efforts to bring awareness to the many forms of racial inequality and injustice in our country. We invite members to join in this discussion, however comments and remarks must be related to the subject of race and healthcare only. We remind members that we do not allow political discussion or commentary on this forum and any remarks outside the subject of healthcare will be edited or removed. Thank you. DINET has always been grounded by the principle of support. In alignment with our mission of support, we believe Black Lives Matter and support organizations, movements and people working to reduce racism, discrimination, prejudice, violence and systemic injustice in our country and throughout the world. And, as an organization that believes wholeheartedly in advancing healthcare for our members who live with dysautonomia, we must acknowledge that we have not done a good job recognizing the inequities in healthcare experienced by Black Americans day in and day out, including those who live with dysautonomia. We are sorry to our Black members, brothers, and sisters for not joining the conversation sooner. We are listening. We will keep educating ourselves. And, as we continue to work toward our goal of a more equitable healthcare system, we will be conscientious about recognizing the particular healthcare inequities faced by Black Americans. Sincerely, DINET Board of Directors and Administrators To view links and resources related to this subject, please visit https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/racial-disparity-and-healthcare-r237/
  7. @Starrynight I am so glad that you found us! Your story is so typical of so many of us with dysautonomia. I read a portion of your post out-loud to my husband and after every few sentences said "that sounds just like what you went through". My PCP suggested POTS to me and gave me an article to give to my cardiologist (after I wore heart monitors multiple times) showing only "non-threatening" rhythm issues. The cardiologist wouldn't even consider POTS or read the article and handed it back to me while telling my husband to consider a therapist for me. After choice words from both my husband and me, we walked out and found another doctor. You are right, we can not diagnose you, but your symptoms are real and any doctor who refuses to seriously consider a disorder so closely mirroring your symptoms should be fired. The medical system is intimidating and even more so when you feel ill and need them the most. So it is hard sometimes to remember that they work for you! As with any one else in your employ, if they aren't listening or following direction, they need to be replaced. @Pistol has given you excellent advice on how to proceed and how to (hopefully) manage your symptoms. I would add a couple of things - sometimes doctors are not familiar with the term dysautonomia, some are more familiar with POTS. But they all are familiar with the autonomic system and the symptoms caused when it isn't working correctly. Sometimes, you can get further if you can find a common terms to use for discussion. Don't give up on a doctor because they haven't heard of dysautonomia or POTS. They can still be a great ally I ran into a hiccup when I finally found a cardiologist familiar with POTS who ordered my first TTT. It was negative. Luckily, the cardiologist was convinced from my symptoms and discussions with my PCP, that something was going on with my autonomic system. So even though I didn't fit the diagnostic criteria for POTS, I fit the symptoms for some form of autonomic dysfunction (dysautonomia). I was referred to a neurologist who had experience in autonomic issues and have been successfully managed since then. I add this because the MOST important thing is finding a doctor who believes you and is willing to partner with you. If you have a good relationship with your PCP, they can be extremely valuable in helping you find the right fit for treatment. My PCP believed in me and trusted my judgement, so she sent a letter of introduction to each new doctor I've had, explaining what my symptoms are, how real they are and her background with me as a patient. It is sad to say, but a doctor telling another doctor (in professional terms) this patient is telling the truth, this is not anxiety, depression or mental illness, has saved me a lot of time and frustration. We shouldn't need to have a doctor vouch for us, but I've found that it has helped save me from multiple visits trying to convince a new doctor that I really am ill. I agree with @Pistol completely when she suggests that you keep researching, learning and advocating for yourself. You have already proven that you have the capacity to be your own detective by finding our site and forum. Keep reaching out for help and guidance and especially support. It is a very difficult illness for people to understand because like with so many other "invisible illnesses", you can look great, seem great much of the time. You can look wonderful even when your symptoms are at their worst. And the fatigue that comes with dysautonomia is a hard symptom for family and friends to understand too. I hope you will post again and reach out when you need support. You are not alone in this. Best of luck in finding a doctor or getting tested and let us know how you are doing.
  8. DINET's VP, Chelsea Goldstein posted this question to the dysautonomia community to see what tips people came up with to explain to the "healthy" world, what we have discovered during our years of frequent stay-at-home time and isolation. 2020.03 V2 COVID-19 tips_CGoldstein.pdf
  9. A friend of mine gave me a great idea for shopping yesterday. We live in a very cold area - in fact we are supposed to get 6 inches of snow tomorrow. So our cars aren't hot and even having the heat on in the car doesn't help because it gets cold so fast. Her suggestion was to bring gloves with you to the store, preferably disposable gloves. You can still get disposable gloves at Amazon. They don't need to be medical gloves, just something to wear over your hands. Put them on right before you go in the store, throw them away before you get in your car. Once in the car, use sanitizer and then of course wash your hands thoroughly when you get home. If you can't get disposable gloves, wear winter gloves through the store. You would still take them off and put them in a pocket until you get home or better yet, on the floor of your car. You can wash them when you get home. Even with gloves, you will still need to wipe down your groceries, etc. But the idea of the gloves is that they remind you not to touch your face! They have blue, orange, black colors available and anything colorful will work. Nothing is 100% naturally, but the main danger is touching your face in public, so anything that helps with that, will, hopefully keep us safe. Best wishes everyone!
  10. In theory, young people with CFS and orthostatic intolerance (plus or minus some form of hypermobility) should not be at greatly increased risk of severe coronavirus disease compared to others their age, provided they don’t have untreated respiratory conditions like asthma. The data from China and from the state of Washington both suggest that not only do children and adolescents have milder disease and fewer hospitalizations, but they also seem to get the coronavirus less frequently. Only 1% of the known cases in China were children, even though children represent 20% of the Chinese population. That is a curious phenomenon, and might ultimately prove to be due to the fact that the young people were asymptomatic and didn't go in with illnesses that would warrant testing. In any event, it speaks to the milder nature of the illness in younger people. The epidemiologic data suggest a marked increase in disease severity for each decade above 50-60, especially for those with lung disease like chronic obstructive pulmonary disease (COPD), high blood pressure, and diabetes. So, my pediatric and young adult patients should be relatively protected from severe disease because of their younger age. They also know more than most about social isolation and avoiding illness than most of the general public, so they have much to teach others about how to manage. That said, we don’t have all the facts to make good decisions yet. All I can tell you is that I have not had anyone from my clinic develop coronavirus thus far, acknowledging that we are early in the pandemic. I completely agree with being cautious. The more we can do now to prevent person-to-person spread, the less likely we will be to replicate the Italian experience where the hospitals are overwhelmed. Using all of the CDC recommendations makes good sense (hand washing, elbow bumps, sanitizer, social isolation, avoiding crowds). On the issue of using face masks, I differ from some of my medical colleagues. Many of their comments are an attempt to deal with limited supply of face masks. But, we are all advised in the hospital to don a face mask when dealing with patients who have respiratory symptoms. So, as a protective measure I would wear a mask in public even though the official recommendation is that it won’t stop the spread of droplets of virus. I suspect it will stop at least some droplets, but the neglected point about facemasks is that they help remind you to not touch your face and inoculate the nasal passages with virus from your hands. They may also create a bit of social isolation, as people will keep their distance from anyone wearing a mask! Some people have been sewing their own facemasks, in an effort to help address the shortages. This is an amazingly positive effort. My Pediatric Pulmonary colleagues do not think asthma will be a big risk factor, based on their reading of the evidence. Similarly, we don’t think EDS and mast cell activation will necessarily confer an increased risk. Most classes have been cancelled by now. For those who are working, I would try to work remotely, especially in the next couple of weeks. This might be acting in an overly cautious manner, but I think none of us have to apologize for being overly cautious at this juncture. The key at this stage is to be very rigid and strict about complying with the recommendations for social distancing and isolation. Remind your friends and family (skeptical or not) that this is no joke, and that lives depend on us pulling together like we all did in response to 9/11/2001. We can do this! Peter Rowe, MD Director, Children's Center Chronic Fatigue Clinic John Hopkins University School of Medicine Professor of Pediatrics EXPERTISE Adolescent Medicine, Chronic Fatigue Syndrome, Orthostatic Intolerance, Pediatrics, Postural Orthostatic Tachycardia Syndrome (POTS), Syncope RESEARCH INTERESTS Chronic fatigue syndrome; Fibromyalgia; Elhers-Danlos Syndrome; Orthostatic intolerance syndromes; Gulf War illnesses; Pelvic congestion syndrome
  11. NOTE from DINET: The following articles and information were shared with us during the early months of the pandemic. Although the information is still very useful and the links provided a great resource, be aware that some of the information and guidelines may have changed since the articles were written. Please visit the CDC website for the most recent recommendations concerning masks, vaccines and safety guidelines. COVID-19 Research: study conducted by Dr. Blitshteyn for Neurologists treating a variety of dysautonomia disorders. Also, patient research conducted the Rare Disease Network for people living with rare diseases, whether you have had any exposure to COVID or not. Visit our Recruitment Studies page for info on both studies. Statement from Dr. Peter Rowe, Director of Children's Center CFS Clinic, John Hopkins Univ. School of Medicine on COVID-19 and CFS and OI Dysautonomia and Coronavirus - an article by Dr. Blitshteyn, one of DINET's medical advisers. COVID-19 Part 2 - Article by Dr. Blitshteyn, Director and Founder of the Dysautonomia Clinic. This article tells you what to do now. From DINET: We live with chronic illness - tips for COVID-19 isolation then join the forum to weigh in with your tips - POTS is like cabin fever Important information you need to know about face masks From the Global Genes and the Rare Disease Network Government Updates World Health Organization: Rolling Updates on COVID-19 World Health Organization: COVID-19 Online Courses Centers for Disease Control & Prevention: Guidelines for people at High Risk Centers for Medicare and Medicaid Services: Current Emergencies Centers for Medicare and Medicaid Services: Coronavirus (COVID-19) Partner Toolkit Cambridge Rare Disease: Current UK NHS & Government Information & Guidance City of Little Rock: Experiencing symptoms related to COVID-19? City of Little Rock: ¿Tiene síntomas relacionados con COVID-19? (Spanish) Food & Drug Administration:COVID-19 What’s New and Fast Facts National Institutes of Health: COVID-19 Updates World Health Organization: Coronavirus Information Centers for Disease Control & Prevention: Coronavirus Information Center U.S. Government: State Health Department Directory Coronavirus (COVID-19) Education & Information Día de la Mujer Latina: Dispelling the Myths and Rumors of the New Coronavirus Disease (Webinar) Día de la Mujer Latina: Disipando los Mitos y Rumores del Nuevo Coronavirus (Webinario) GRIN2B Foundation: Flip Book Social Story SCN2A Australia: Podcast on COVID and Epilepsy Coronavirus Support Network: FAQ (English) Coronavirus Support Network: FAQ (Spanish) Coronavirus Support Network: FAQ (Portuguese) National Health Council: COVID-9 Preparedness for people with chronic disease (Webinar) Association of Community Cancer Centers: COVID-19 Resource Center American Society of Clinical Oncology: Coronavirus Resources American Academy of Neurology: COVID-19 Neurology Resource American Thoracic Society: Public Health Information Sheet American Thoracic Society: COVID-19 FAQ Financial Assistance Laughing at My Nightmare: COVID-19 Resource Relief Arkansas Community Foundation: Arkansas COVID Relief Fund Virtual Networking Ehlers-Danios Society: Virtual Chat Rooms Twitter QA: #spooniechat Our Odyssey: Online Meetups The Mighty: Come Hang with the Mighty Events Support Services Robert Wood Johnson Foundation Culture of Health Leaders: Coronavirus Support Network Global Healthy Living Foundation: COVID-19 Support Program for Chronic Disease Patients and Their Families Cancer Support Community: What Cancer Patients, Survivors, and Caregivers Need to Know About the Coronavirus Mental Health Centers for Disease Control & Prevention: Managing Stress and Anxiety During COVID-19 Happy: Online Mental Health Support Talking to Kids Kids Health, Nemours: How to Talk to Your Kids About COVID-9 KinderCare: Talking to Children About Coronavirus At Home Teaching Resources District Administration: Free K-12 Resources We Are Teachers: 130+ Amazing Online Learning Resources Diagnosis, Treatments & Vaccines Milken Institute, FasterCures: COVID-19 Treatment and Vaccine U.S. Food & Drug Administration: Clinical Trial Guidance Mindray: COVID-19 Clinical Diagnostics Webinar Episode 1 Mindray: COVID-19 Clinical Diagnostics Webinar Episode 2 Mindray: COVID-19 Clinical Diagnostics Webinar Episode 3 Mindray: COVID-19 Experts Dialogues Coverage & Benefits Centers for Medicare & Medicaid Services: Coverage & Benefits Related to COVID-19 Medicaid and CHP Foundation Resources Centers for Disease Control & Prevention: Communication Resources Patient Advocate Foundation: COVID-19 Operational Response Plan Nielsen Training & Consulting, LLC: COVID-19 Resources for Nonprofit Leaders Exercise Orangetheory: Orangetheory At Home Gold’s Gym: Stronger Anywhere Peloton: Free App Planet Fitness: Home Work-Ins Crunch: Crunch Live 305 Fitness: Group Classes Corepower Yoga: Keep Up Your Practice American Heart Association: Choose Your Own Workout Entertainment Two Disabled Dudes: Podcast Global Genes: RARECast (Podcast) Rare in Common: Podcast Instagram Live: John Legend Instagram Live: Luke Combs Instagram Live: Coldplay, Chris Martin Instagram Live: Gentle Hours with John Mayer Global Genes: RARE Daily
  12. Dr. Blitshteyn, one of the leading specialists in dysautonomia disorders and one of DINET's medical advisors wrote two articles specific for dysautonomia patients and those with chronic illness. Part 1 - What we should know and Part 2 - What to do now. These are anxious times and certainly even more stressful for those of us living with chronic illness, but being prepared, taking precautions and encouraging our close family members to do the same is the best we can do. We will continue to post information as we receive it. Many thanks to Dr. Blitshteyn. -- DINET Board of Directors
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