#DysSupportChat Transcript
Healthcare social media transcript of the #DysSupportChat hashtag.
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See #DysSupportChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Dysautonomia Support Network @DysSupport Just one hour to go before it’s time for #DysSupportChat https://t.co/NxWdERepEz |
 | Inspire @InspireIsHealth RT @DysSupport: Join us on Today, at 3 pm EDT for a great chat as #EhlersDanlosSyndrome Awareness Month is winding down. Follow along on Twitter using the hashtag #DysSupportChat! Don't forget to follow our Twitter account and also to retweet as much as possible! https://t.co/kngQCIkUrk |
| Dysautonomia Support Network @DysSupport Only thirty minutes to go before we talk about #EDS during #DysSupportChat https://t.co/klpXOPtPTk |
 | Leslie Kathryn RN BSN @dys_les Come join us for an EDS twitter chat! #DysSupportChat |
 | Ody @OdyO11 RT @dys_les: Come join us for an EDS twitter chat! #DysSupportChat |
| Dysautonomia Support Network @DysSupport @TheEDSociety @bobbyjonescsf @teaminspire @BluesteinLinda @PainPathwaysMag @LaraBloomEDS @DysNurse @CathDys calling all #zebras! We start #DysSupportChat in about 20 minutes! |
 | AutonomicRN© @AutonomicRN You don’t want to miss this chat! #EhlersDanlosAwareness #ZebraStrong #DysSupportChat |
| Inspire @InspireIsHealth RT @dys_les: Come join us for an EDS twitter chat! #DysSupportChat |
| Dysautonomia Support Network @DysSupport @dys_les we're looking forward to it too! Make sure to include #DysSupportChat on all of your tweets! |
| Dysautonomia Support Network @DysSupport Join us in a few minutes for our #EDSAwareness Twitter Chat. Get something to stay hydrated and get comfortable. We’re looking forward to everyone joining us! #DysSupportChat |
 | justme @mammabearmuggle RT @DysSupport: Join us in a few minutes for our #EDSAwareness Twitter Chat. Get something to stay hydrated and get comfortable. We’re looking forward to everyone joining us! #DysSupportChat |
| Dysautonomia Support Network @DysSupport New to twitter chats? Follow hashtag #DysSupportChat and include it in every tweet during the next hour. You can engage with others on the topic. |
| Dysautonomia Support Network @DysSupport Here’s a guide with more tips for participating in our Twitter chats: https://t.co/nvMjjtQWne #DysSupportChat |
| Dysautonomia Support Network @DysSupport You can find the topics we’ll cover on today’s #DysSupportChat here: https://t.co/F2A6svzKXD |
 | Kimberly Amelia @fireflyrn84 Definitely get comfy! #DysSupportChat |
| Dysautonomia Support Network @DysSupport Welcome to Dysautonomia Support Network’s #EhlersDanlosAwareness Month Twitter chat. Thank you for joining today. Let’s take 5 minutes to say hello and introduce yourself and tell us where you’re tweeting from! #DysSupportChat https://t.co/Bb44kIbhNT |
| Dysautonomia Support Network @DysSupport I'm Kim and I will be moderating today's chat. Our chat today is solely informational and is not a substitute for medical advice. #DysSupportChat |
| Kimberly Amelia @fireflyrn84 I’m Kim! I’m from Wisconsin. I received my #EhlersDanlosSyndrome diagnosis in October although my neurologist had suspected it prior to that. I’ll be in and out today with the chat :) #DysSupportChat |
| Ody @OdyO11 @DysSupport Hi, I am a patient with hEDS, CCI, dysautonomia, MCAS etc. from Europe. I stumbled upon the info about the chat and decided to participate. I decided to stay anonymous on twitter, so I might answer a bit more vaguely to questions that might identify me. #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @DysSupport whoops forgot to put the #DysSupportChat |
| Dysautonomia Support Network @DysSupport @dys_les Hi Leslie! Great to see you! #DysSupportChat |
| Dysautonomia Support Network @DysSupport @OdyO11 We are so glad that you found us and hope you enjoy the chat! #DysSupportChat |
| Dysautonomia Support Network @DysSupport As we are nearing the end of #EhlersDanlos Awareness Month, we didn't want to miss this opportunity to chat with everyone about some things that many of us can relate to. Let's show our #zebrapride and get this #DysSupportChat going! |
| Dysautonomia Support Network @DysSupport @dys_les It happens ;) #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @OdyO11 @DysSupport Welcome! We are glad to have you. You have the trifecta of diagnosis: hEDS, dysautonomia, and MCAS! #DysSupportChat |
| Ody @OdyO11 @DysSupport Thanks for hosting the chat! #DysSupportChat |
| Dysautonomia Support Network @DysSupport I will introduce new topics with T1, T2... Please respond T1, T2, etc. - sometimes it is hard to remember but it is helpful so we can all keep on the same track. Also, remember to include #DysSupportChat in EVERY tweet! Here we go! |
| Ody @OdyO11 RT @DysSupport: As we are nearing the end of #EhlersDanlos Awareness Month, we didn't want to miss this opportunity to chat with everyone about some things that many of us can relate to. Let's show our #zebrapride and get this #DysSupportChat going! |
| Dysautonomia Support Network @DysSupport @OdyO11 Absolutely! We love raising awareness and letting others interact with us! The more the merrier! #DysSupportChat |
 | Radha @radhachitale Hello! Digital ed from @teaminspire here, happy to chat! 👋🏽 |
| Dysautonomia Support Network @DysSupport @radhachitale @teaminspire Hi Radha! Great to see you! #DysSupportChat |
| Dysautonomia Support Network @DysSupport T1: #EhlersDanlosSyndrome is something that many people haven't heard of until they are diagnosed. What can you do as an individual to help raise awareness? #DysSupportChat https://t.co/mzR2jnC8AM |
| Ody @OdyO11 @dys_les @DysSupport Thank you! Even though I have the trifecta, I experience my CCI as the most relevant contributor to my symptoms (including dysautonomia) and disability. I would love for more research into CCI. #DysSupportChat |
| Dysautonomia Support Network @DysSupport @OdyO11 @dys_les We all would. DSN represents many conditions. You can check us out online at https://t.co/FuKX2exxFz or find us on facebook as well! #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @DysSupport T1: #DysSupportChat Be ready with an explanation about my hypermobility, dislocations, subluxations, etc. wear anything zebra and explain about it. proclamations, walks, doctor education. |
| Dysautonomia Support Network @DysSupport @dys_les Great ideas! #DysSupportChat |
| Ody @OdyO11 @DysSupport A1: Keep myself informed and forward information to my doctors (EDS ECHO is a great project for example). Help patients navigate the health system. Try to win doctors' and researchers' interest in EDS. Share my story on twitter. #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @DysSupport #DysSupportChat I am finding that we are making headway in the awareness front. When I have explained that I am hypermoble some have actually known about EDS, though they usually leave off the 's' and let me know I have ED. |
| Dysautonomia Support Network @DysSupport Well, you have to have a little bit of a giggle sometimes... #DysSupportChat |
| Kimberly Amelia @fireflyrn84 T1: Take educational materials to my doctor appointments, participate in twitter chats like this, and even just spread the word among friends, family etc #DysSupportChat |
| Ody @OdyO11 @DysSupport @dys_les Thanks, I will check it out. There is some interesting research in the field of (cervical) spinal cord injury, e.g. by A. Krassioukov. It would be so great to connect the dots. https://t.co/EwExwk08ML #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @OdyO11 @DysSupport Are you involved with EDS ECHO? #DysSupportChat |
| Dysautonomia Support Network @DysSupport I agree wholeheartedly; connecting the dots would be wonderful for so many of us. #DysSupportChat |
| Ody @OdyO11 @dys_les @DysSupport No, to my knowledge it is only open for medical professionals (which I am not). But I think the concept is great. #DysSupportChat |
| Dysautonomia Support Network @DysSupport T2 coming up... #DysSupportChat |
| Inspire @InspireIsHealth RT @fireflyrn84: T1: T1: Take educational materials to my doctor appointments, participate in twitter chats like this, and even just spread the word among friends, family etc #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @DysSupport #DysSupportChat There is definitely a connection, we just have to keep digging. I am excited to see what the future holds as far as diagnosis and treatment! We are making waves! |
| Dysautonomia Support Network @DysSupport T2: What are your best tips for someone newly diagnosed with #EhlersDanlosSyndrome? #DysSupportChat https://t.co/xFHyjS5KEw |
| Leslie Kathryn RN BSN @dys_les @DysSupport #DysSupportChat I think it would have to be the importance of finding a strong support system and medical team. Making sure they are knowledgeable, or at least willing to learn, and know when they are out of their depths. Having the support is huge. Also get educated. |
| Radha @radhachitale RT @DysSupport: T2: T2: What are your best tips for someone newly diagnosed with #EhlersDanlosSyndrome? #DysSupportChat https://t.co/xFHyjS5KEw |
| Dysautonomia Support Network @DysSupport Project ECHO that @dys_les mentioned is through @TheEDSociety This is a program for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD and associated symptoms and conditions.https://t.co/PD0ToJC7iY #DysSupportChat |
| Ody @OdyO11 @DysSupport Trust your body perception. Get in touch with other patients. Seek doctors with expertise in EDS. Educate yourself. Know that there is a systemic bias against patients with complex symptoms. When doctors see you with a deficit-oriented bias, it's not your fault. #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @DysSupport #DysSupportChat Be your own advocate. I also would encourage working on strengthening and exercising appropriately. FInd someone who can tailor an exercise program for your unique needs and based on where you are at the moment. |
| Ody @OdyO11 RT @DysSupport: T2: T2: What are your best tips for someone newly diagnosed with #EhlersDanlosSyndrome? #DysSupportChat https://t.co/xFHyjS5KEw |
| Leslie Kathryn RN BSN @dys_les @DysSupport #DysSupportChat Also do not be afraid to speak up about what is going on with your body. The providers cannot help you if you are not honest with how you are feeling and what is going on. |
| Kimberly Amelia @fireflyrn84 T2: Hmm...definitely educate yourself. Make sure you have a medical team that understands #EhlersDanlosSyndrome and that they can provide the best care for you! After all, we, as patients are the priority! #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @OdyO11 @DysSupport #DysSupportChat I have found that as well, once you list off three chronic conditions that are not CHF, Diabetes, or arthritis some providers are hesitant to help or do not truly get an understanding of the complexity of care. |
| Ody @OdyO11 RT @DysSupport: Project ECHO that @dys_les mentioned is through @TheEDSociety This is a program for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD and associated symptoms and conditions.https://t.co/PD0ToJC7iY #DysSupportChat |
| Dysautonomia Support Network @DysSupport This!!! Appropriately strengthening and exercising is key! Slow and gentle but always do this with your healthcare provider #DysSupportChat #EhlersDanlosAwareness |
| Leslie Kathryn RN BSN @dys_les Such a great project! Check it out! |
| Dysautonomia Support Network @DysSupport T3 coming up... #DysSupportChat |
| Ody @OdyO11 @dys_les @DysSupport I think it is an inbuilt bias. Doctors are trained to think this way, and most doctors don't question it. Complex symptoms are often seen as psychogenic. That's why it's so important to find doctors who have EDS-specific knowledge. #DysSupportChat |
| Dysautonomia Support Network @DysSupport @OdyO11 You nailed this one on the head! Being a complex patient is not your fault. There is a lack of educated practitioners and that is something that needs addressed all the way across the continuum of care #DysSupportChat |
| Dysautonomia Support Network @DysSupport RT @dys_les: @DysSupport #DysSupportChat Also do not be afraid to speak up about what is going on with your body. The providers cannot help you if you are not honest with how you are feeling and what is going on. |
| Dysautonomia Support Network @DysSupport @OdyO11 @dys_les Yes, you definitely need providers that have #EDS knowledge so you can get the highest level of care. #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @DysSupport #DysSupportChat I have had to start strength training to work on allowing my body to have better support with my joints. I also rest when I need to rest. I have had to also use braces to help provide more support at various times. |
| Dysautonomia Support Network @DysSupport Patients are the priority! Educate, educate, educate! We have educational materials on our website that you can take to appointments or just for educating yourself more. #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @DysSupport #DysSupportChat, unfortunately, kinesiology tape makes my skin react, so I have not been able to to use that, though I know of many who do with success. |
| Ody @OdyO11 @DysSupport Oh! I almost missed this question. #DysSupportChat |
| Ody @OdyO11 @DysSupport Get to know my body and "red flag" symptoms. I started with having a symptom diary. I learned that when my personal red flag symptoms appear, I need to lie down and rest. Immediately. With yellow flag symptoms, the cervical collar can do it. #DysSupportChat |
| Ody @OdyO11 @DysSupport Training is okay on good days. On bad days, training only makes things worse for me. So it's about getting to know my body. Oh, and MCAS medication helps immensely for GI symptoms. #DysSupportChat |
 | Amanda Marie @AmandaAikulola @DysSupport Replying to #DysSupportChat Do not get overwhelmed by the diagnosis. Remember you were born with this and have been living with it your whole life. Having a name for it validates your experience but does not give it power. |
| Kimberly Amelia @fireflyrn84 A symptom diary can be your best friend because it will start to show trends. I keep one and take it with me to doctor appointments. With my #Dysautonomia and #EDS along with others, I don’t necessarily recognize a new symptom even! #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @OdyO11 @DysSupport #DysSupportChat I love that you use a symptom diary. It was so helpful for me when dealing with my migraines and other symptoms to be able to track patterns, and see what interventions helped the best. Sometimes it was hard to remember to do it, but it was very helpful! |
| Dysautonomia Support Network @DysSupport T4 coming up... #DysSupportChat |
| Ody @OdyO11 @DysSupport Recognizing the cause of symptoms was generally important for me. I realized that wearing a cervical collar on car rides and public transportation helps a lot, too. #DysSupportChat |
| Dysautonomia Support Network @DysSupport ⤵️ spot on! A diagnosis does NOT give it power! A diagnosis will empower you. #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @AmandaAikulola @DysSupport #DysSupportChat. Yes this is key! Sometimes it can be overwhelming, but it is important to take it one step at a time and continue to educate and empower yourself while helping your body. |
| Ody @OdyO11 @dys_les @DysSupport Yes, it definitely is (or at least was until I felt confident that I understood triggers). Have you recognized patterns/triggers regarding your migraine? #DysSupportChat |
| Dysautonomia Support Network @DysSupport T4: What do you wish you knew when you were diagnosed that you know now? #DysSupportChat https://t.co/0ixypdE7EU |
| Dysautonomia Support Network @DysSupport @OdyO11 that's a great idea! #DysSupportChat |
| Ody @OdyO11 @DysSupport There are still many open questions in research. Research proceeds, but it takes time. Don't expect doctors to be able to answer all your questions. Be patient. #DysSupportChat |
| Kimberly Amelia @fireflyrn84 T4: I wish I would have known how fragile my body was. I thought I knew— this year has proven me wrong. We were in a car wreck in January. Prior to that I had no bulging discs anywhere. Now I have 4 bulging disks and also have a probable major tear in my shoulder #DysSupportChat |
| Ody @OdyO11 @DysSupport Also: Neurologists with expertise in dysautonomia are a great resource to turn to when you have symptoms of dysautonomia. In my experience, they think scientifically and are less likely to assume psychogenesis of symptoms. #DysSupportChat |
| Kimberly Amelia @fireflyrn84 @AmandaAikulola @DysSupport It’s so easy to get overwhelmed, when we already have more that our share of other diagnoses. We have to find strategies to cope and learn the new-normal. Once you realize that your really have lived with it your entire life, puzzle pieces fit together #DysSupportChat |
| Ody @OdyO11 @fireflyrn84 I am sorry to hear that. And I second your experience about the fragility of my body. In the past, my experience was that I was fragile, but that I could push through. In recent years I realize that I can't push through any more without risking permanent damage. #DysSupportChat |
| Dysautonomia Support Network @DysSupport T5 in a couple minutes! This hour is flying by. #DysSupportChat |
| Dysautonomia Support Network @DysSupport @OdyO11 They are a great resource, unfortunately there are many areas without any. So we educate as much as possible and raise awareness for everything. #DysSupportChat |
| Ody @OdyO11 @DysSupport This is so important; thank you! Imho, dysautonomia should be a mandatory topic for each medical speciality... #DysSupportChat |
| Dysautonomia Support Network @DysSupport T5: How have you explained #EhlersDanlosSyndrome to your friends and family members? #DysSupportChat https://t.co/lWwHwHyT6F |
| Dysautonomia Support Network @DysSupport We agree! #DysSupportChat |
| Kimberly Amelia @fireflyrn84 @OdyO11 I totally agree. I never thought that at 34 years old that I would be facing seeing orthopedic surgeons two weeks apart. I never would have imagined this in a million years. All I can do is make the best of it and care for my body the best way that I can. #DysSupportChat |
| Ody @OdyO11 @DysSupport A5: My connective tissue, my collagen, is built the wrong way. Connective tissue is pretty much everywhere in our bodies, e.g.joints & ligaments. My main problem is an instability between my skull and my upper cervical vertebrae, which has affected my spinal cord. #DysSupportChat |
| Ody @OdyO11 @fireflyrn84 I realized: My body has its weaknesses, its vulnerabilities. But it's been doing an amazing job to compensate these weaknesses all those years. I should support it the best way I can. #DysSupportChat |
| Kimberly Amelia @fireflyrn84 T5: First it was figuring out which side of the family I had even gotten my #EDS from and it actually looks like there are signatures on both sides. My geneticist actually told me that I had to have conversations with everyone in my family to encourage testing! #DysSupportChat |
| Dysautonomia Support Network @DysSupport This is the best description I have heard and it is so true! We do need very experienced pit crews! #DysSupportChat |
| Kimberly Amelia @fireflyrn84 Exactly! I always say that the glue that holds me together is loose. Sometimes I have to bring it down to a little bit more simple level just so people can picture it. Your description is great! #DysSupportChat |
| Dysautonomia Support Network @DysSupport Is everyone aware that there is an #EhlersDanlosSyndrome global registry? Here is the link to go sign up: https://t.co/OdJcyA8QS2 #DysSupportChat |
| Dysautonomia Support Network @DysSupport Thank you to everyone for joining our chat today! Analytics will be posted within the hour and the chat transcript will be as well. Have a great day! #DysSupportChat |
| Ody @OdyO11 RT @DysSupport: Is everyone aware that there is an #EhlersDanlosSyndrome global registry? Here is the link to go sign up: Is everyone aware that there is an #EhlersDanlosSyndrome global registry? Here is the link to go sign up: https://t.co/OdJcyA8QS2 #DysSupportChat |
| Dysautonomia Support Network @DysSupport I have two more resources to share with everyone. We have an extensive education portion on our website https://t.co/ByUTYMBNfF and we also have a patient handbook that has a lot of really good information! https://t.co/xZ8MvjFbJ9 #DysSupportChat |
| Ody @OdyO11 @DysSupport Thanks for hosting the chat! #DysSupportChat |
| Dysautonomia Support Network @DysSupport You can find us on facebook & join our community. We have groups in all 50 United States and also have caregiver and military forums along with our lifestyle clubs. @teaminspire is also a partner and you can find our community on there as well! Have a great day! #DysSupportChat |
| Dysautonomia Support Network @DysSupport @OdyO11 You are very welcome! Thank you for joining, we hope to see you back the next time we chat. Follow us on Twitter and then you will see the chat notifications. In the meantime, take care. #DysSupportChat |
| Ody @OdyO11 @OurStoryStudio @DysSupport Oh, finding neurologists that need to be educated probably isn't the problem - but finding neurologists who are interested and willing to get educated, and who can spare the time to do so. #DysSupportChat |
| Ody @OdyO11 @OurStoryStudio @DysSupport I agree. It might be an option to present at big congresses (neurology as well as other medical specialties), to publish articles in magazines read by many doctors,... To get the knowledge to where doctors are anyway. #DysSupportChat |
#DysSupportChat content from Twitter.