#DysSupportChat Transcript
Healthcare social media transcript of the #DysSupportChat hashtag.
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See #DysSupportChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Leslie Kathryn RN BSN @dys_les Come join us for an EDS twitter chat! #DysSupportChat |
 | 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 https://t.co/FYJ3Ip2ScL |
| @ Definitely get comfy! #DysSupportChat | |
| @ 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 [REDACTED USER] 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 [REDACTED USER] whoops forgot to put the #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les @OdyO11 [REDACTED USER] Welcome! We are glad to have you. You have the trifecta of diagnosis: hEDS, dysautonomia, and MCAS! #DysSupportChat |
| Ody @OdyO11 [REDACTED USER] Thanks for hosting the chat! #DysSupportChat |
 | Radha @radhachitale Hello! Digital ed from @teaminspire here, happy to chat! |
| Radha @radhachitale Hello! Digital ed from @teaminspire here, happy to chat! 👋🏽 |
| Ody @OdyO11 @dys_les [REDACTED USER] 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 |
| Leslie Kathryn RN BSN @dys_les [REDACTED USER] T1: #DysSupportChat Be ready with an explanation about my hypermobility, dislocations, subluxations, etc. wear anything zebra and explain about it. proclamations, walks, doctor education. |
| Ody @OdyO11 [REDACTED USER] 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 [REDACTED USER] #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. |
| @ 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 [REDACTED USER] @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 [REDACTED USER] Are you involved with EDS ECHO? #DysSupportChat |
| Ody @OdyO11 @dys_les [REDACTED USER] No, to my knowledge it is only open for medical professionals (which I am not). But I think the concept is great. #DysSupportChat |
| Leslie Kathryn RN BSN @dys_les [REDACTED USER] #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! |
| Leslie Kathryn RN BSN @dys_les [REDACTED USER] #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. |
| Ody @OdyO11 [REDACTED USER] 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 [REDACTED USER] #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. |
| Leslie Kathryn RN BSN @dys_les [REDACTED USER] #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. |
| @ 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 [REDACTED USER] #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. |
| Leslie Kathryn RN BSN @dys_les Such a great project! Check it out! |
| Ody @OdyO11 @dys_les [REDACTED USER] 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 |
| Leslie Kathryn RN BSN @dys_les [REDACTED USER] #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. |
| Leslie Kathryn RN BSN @dys_les [REDACTED USER] #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 [REDACTED USER] Oh! I almost missed this question. #DysSupportChat |
| Ody @OdyO11 [REDACTED USER] 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 [REDACTED USER] 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 [REDACTED USER] 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. |
| @ 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 [REDACTED USER] #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! |
| Ody @OdyO11 [REDACTED USER] 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 |
| Leslie Kathryn RN BSN @dys_les @AmandaAikulola [REDACTED USER] #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 [REDACTED USER] 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 |
| Ody @OdyO11 [REDACTED USER] 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 |
| @ 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 [REDACTED USER] 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 |
| @ @AmandaAikulola [REDACTED USER] 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 |
| Ody @OdyO11 [REDACTED USER] This is so important; thank you! Imho, dysautonomia should be a mandatory topic for each medical speciality... #DysSupportChat |
| @ @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 [REDACTED USER] 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 |
| @ 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 | |
| @ 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 | |
| Ody @OdyO11 [REDACTED USER] Thanks for hosting the chat! #DysSupportChat |
| Ody @OdyO11 @OurStoryStudio [REDACTED USER] 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 [REDACTED USER] 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.