#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| Patient Chat @patientchat Please introduce yourself and say hello. I’ll share a couple “ground rules" :) #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings, tribe! Casey Q here, doing many things including #journo #epatient #podcasts #Healthliteracy #PatientsIncluded Loud for a living. #patientchat |
 | Alexa Jett 🦋 @ohhiialexa Alexa here again for #patientchat! Beautiful day here in East Texas to talk about important things in our community. ☺️ |
 | 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat Happy Friday! 👋🏼😉 I’m Tiffany Kairos. #Epilepsy Blogger, Advocate and founder of @TENofficial 💜 #patientchat |
| Patient Chat @patientchat I'm Kara from @power4patients and I am excited to hear what everyone has on their mind today! #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/4DHg71lp67 #patientchat |
 | Carly Flumer (she/her) @carlyflumer Hey, I’m Carly! An #AYA #thyca patient and advocate. 🦋 Happy #HealthLiteracyMonth! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey OH, and totes forgot my Numero Uno classification, member of #BCSM! DX Xmas 2007, St2a ER/PR+, NED since Xmas 2008 =) #patientchat |
 | Simply Kristy @SimplyKristyD @ohhiialexa Hi Alexa! #patientchat https://t.co/d7q7M7gOek |
| Simply Kristy @SimplyKristyD Intro: Hi There! I am Kristy, rare disease patient living with Ehlers-Danlos Syndrome and Anklyosing Spondylitis amongst a few other co-morbidities. Looking forward to today's chat. #patientchat |
 | Patient Empowerment Network @power4patients RT @patientchat: You can find info on today’s Empowered #patientchat here: You can find info on today’s Empowered #patientchat here: https://t.co/lxEB7UMHYi https://t.co/jsIZmp1LDU |
| Patient Chat @patientchat @TiffanyKairos @power4patients Hi Tiffany! I am (especially since it's Friday :]) I hope your day has been going well and I'm glad you could join us today #patientchat |
| Patient Chat @patientchat Today on #patientchat we offer you the "mic". You are free to ask ?’s, make comments, share your story, etc. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey And did I mention that I early-voted today? Dropped off my ballot (mail-in iteration) at 11:30am ET today. #ProtectOurCare #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer I hope together we can make thyroid cancer awareness and health literacy a priority for everyone always! ❤️ #patientchat |
| Patient Chat @patientchat So, for today we won't have our regular labeled Topic Questions (T1: T2: etc.) but will have more of a free flow discussion. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @SimplyKristyD Hello friend! 😃#patientchat https://t.co/qfK6MPFcOU |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat I'm Adam. I have a #RareDisease called mitochondrial myopathy which led to another called extrinsic restrictive disease. I'm a self-proclaimed DadVocate who started social media accounts & a website/blog (https://t.co/U0Bdme4gsA) hoping to connect with & help others. #patientchat |
| Patient Chat @patientchat There are some starter ideas in today's event listing to get us started :) https://t.co/lxEB7UMHYi #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa #lifegoals #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat @power4patients Thanks! Super happy to be here with all of you! 😁🙌🏼 #patientchat https://t.co/7gAR6k3cRW |
| Patient Chat @patientchat So here we go… #patientchat |
| Patient Chat @patientchat What is on your mind today? What empowered patient topics would you like to chat about? Jump right in and get us started! :) #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat Hi Adam, it's nice to see you again :) #patientchat https://t.co/tTT45Rrtda |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey I'll kick off my traffic w/fact that I've been helping a buddy dx-ed w/melanoma - AFTER THEY POINTED OUT CLEAR SIGNS ON LOWER LEG FOR TWO F'ING YEARS to "it's nothing" from derm - now they have post-op infection, lotsa "whatever" from major adacemic med ctr #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: What is on your mind today? What empowered patient topics would you like to chat about? Jump right in and get us started! :) #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat I have been journeying with #epilepsy for over a decade. Diagnosed at age 22 after experiencing my 2nd seizure while driving. Crashed into a tree. Just 4 months after my marriage. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey As of today, acad med ctr is saying "broad spectrum abx is fine" and not doing culture OR blood work re infection. This, my friends, is medical error 101. My buddy's talking malpractice suit BUT has to get to not-infected/not-dead first. #patientchat |
| Simply Kristy @SimplyKristyD @TiffanyKairos @patientchat So sorry to hear about your accident, Tiffany #patientchat |
| Alexa Jett 🦋 @ohhiialexa After the last virtual #patientchat, I’ve been thinking a lot about comedy and cancer/chronic illness. I enjoyed hearing Summer talk about using improv to cope, and I’ve met a few other improv/comedy-as-therapy people in the last 2 weeks! |
| Patient Chat @patientchat RT @ohhiialexa: After the last virtual #patientchat, I’ve been thinking a lot about comedy and cancer/chronic illness. I enjoyed hearing Summer talk about using improv to cope, and I’ve met a few other improv/comedy-as-therapy people in the last 2 weeks! |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos It is my hope to shine a light on those who are affected by #epilepsy in any capacity. Whether patient, caregiver, physician etc. #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat Hanging in there! Glad we've made it to Friday #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @SimplyKristyD @patientchat Thank you. 🙂 This diagnosis was a blessing in disguise. Ultimately leading me to where I am today. #epilepsy #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey My "help" in form of post-op literal help (driving, cooking, etc.) for abt 2 wks. Now I'm home, buddy is home-care currently, but acad med ctr (1 hr away from them) is flailing/to-ing/fro-ing him ... and still no culture/blood work. Oh, and CVS is outta med RXed. #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientsfirstcd @patientchat So kind of you, friend! Thank you! 💜 #patientchat |
| Simply Kristy @SimplyKristyD @TiffanyKairos @patientchat I understand that. It took about 7 years to finally get my diagnosis #patientchat |
 | Alan Brewington @abrewi3010 In light of the scary political debate and I just got done with 3 weeks of trigger point injections, how about a joke? Which country has the worst musicians? Singapore 😂#patientchat |
| Patient Empowerment Network @power4patients @ohhiialexa I'm so glad to hear your feedback! Summer is one of our @power4patients Network Managers, as is the awesome @carlyflumer. We're planning to expand the program in 2021 so please stay tuned #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @SimplyKristyD @patientchat Wow! Why so long? If you don’t mind me asking. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey So, despite my best #epatient efforts - and my buddy's, who's retired journo w/mad comms skills whose mom was an MD - it's a sh*t show. Welcome to the best medical care in the world? YMMV ... #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat What's on my mind today...loaded question! 😂 I do appreciate you asking/providing this forum, though. I'm constantly thinking being a parent w/ a rare disease. It's a struggle sometimes, & I wonder how other parents are handling/dealing with all there is to balance. #patientchat |
 | Janice Tufte @Hassanah2017 Janice #PatientPartner herefrom Seattle today this is on my mind> Many issues that can and will impact all of us in some way this #Winter #ChronicIlness #Aging #PatientChat https://t.co/ZAjOiz0wgv |
| Alexa Jett 🦋 @ohhiialexa @power4patients @carlyflumer How exciting! Will definitely stay tuned. #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos Again, I wish to say 👋🏼☺️ Hi to everyone who has joined in today! #patientchat https://t.co/IJTBhdoz9N |
| Simply Kristy @SimplyKristyD @abrewi3010 Ha! #patientchat https://t.co/Q53d0kAjXN |
| Patient Chat @patientchat What do you think #patientchat? |
| Simply Kristy @SimplyKristyD @TiffanyKairos @patientchat I don't mind at all. It took years for my specialists to put the pieces together, get me to genetic testing and get those results back which led to my diagnosis. #patientchat |
 | Diverse Health Hub @DHealthhub RT @patientchat: What do you think #patientchat? |
| Alan Brewington @abrewi3010 Like I said, just finished 3 weeks of back injections. Earlier this year I had 6 weeks of knee injections. Last year I had 2 heart surgeries in 3 months and a major neck surgery. I’m tired of the paperwork aspect of being a good #epatient. I just want to rehab & eat. #patientchat |
| Simply Kristy @SimplyKristyD @TiffanyKairos @patientchat My care was very silo'd by specialist instead of someone assessing me holistically which I think would have led to a diagnosis faster. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey this is exactly the scenario my aforementioned buddy w/melanoma mess is confronting rn. They don't have lotsa options beyond that acad med ctr, since rural America. Blargh. #patientchat |
 | Matthew Zachary ✡️ 🇮🇱🟦 @MatthewZachary RT @carlyflumer: Hey, I’m Carly! An #AYA #thyca patient and advocate. 🦋 Happy #HealthLiteracyMonth! #patientchat |
| Simply Kristy @SimplyKristyD Question for #patientchat - how do patients feel about utilizing digital tools to assist with patient empowerment? |
| Patient Empowerment Network @power4patients @RareDiseaseDad @patientchat I have 2 kids at home, both doing remote learning, plus an elderly parent who needs quite a bit of support so my strategy is to take it 1 day at a time. Some days are better than others. Some days, I hide in my closet with noise canceling headphones 🤫#patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos How is your relationship your physician? Do you feel as thoughtful are receiving the care and respect that you need and deserve? #patientchat |
| Patient Chat @patientchat RT @TiffanyKairos: How is your relationship your physician? Do you feel as thoughtful are receiving the care and respect that you need and deserve? #patientchat |
| Patient Chat @patientchat RT @SimplyKristyD: Question for #patientchat - how do patients feel about utilizing digital tools to assist with patient empowerment? |
| Diverse Health Hub @DHealthhub RT @SimplyKristyD: Question for #patientchat - how do patients feel about utilizing digital tools to assist with patient empowerment? |
| Diverse Health Hub @DHealthhub RT @TiffanyKairos: How is your relationship your physician? Do you feel as thoughtful are receiving the care and respect that you need and deserve? #patientchat |
| Alexa Jett 🦋 @ohhiialexa @SimplyKristyD I’m very pro-technology. I live in a rural area, and it helps level the playing field by giving me access to more things than I have in my area. But our internet access/reliability must also improve! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey My experience as early adopter of all things tech (fmr engineer) is I use all sorts of #digitalhealth tools, precisely zero of which are of interest to my clinical team, or even portable over to 'em via EHR. #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @SimplyKristyD @patientchat I can understand that. It took years for my neurologist to finally conclude that I had Refractory Epilepsy. Several tests, hospital stays etc. #epilepsy #patientchat |
| Alexa Jett 🦋 @ohhiialexa @power4patients @RareDiseaseDad @patientchat It’s self care! 😉 #patientchat |
| Alan Brewington @abrewi3010 @TiffanyKairos I have great relationships with most of my docs and their staff (important to include them). I spend time and energy developing these relationships. Sharing the story of Big Al is important to me, not just the bad #patientchat |
| Simply Kristy @SimplyKristyD @TiffanyKairos I have a great relationship with my GP. I feel that she provides me very good care and has gone out of her way to learn & educate herself on my condition. #patientchat |
| Patient Empowerment Network @power4patients @SimplyKristyD Excellent question! We're launching a virtual version of digital sherpa™, Digitally Empowered, later in Oct. It's aimed at helping older adults use technology to their advantage. We'll let everyone know asap it's available and hopefully you'll help us share it #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: @SimplyKristyD Excellent question! We're launching a virtual version of digital sherpa™, Digitally Empowered, later in Oct. It's aimed at helping older adults use technology to their advantage. We'll let everyone know asap it's available and hopefully you'll help us share it #patientchat |
| Simply Kristy @SimplyKristyD @patientsfirstcd @TiffanyKairos @patientchat Agreed - the trial and error involved in getting to my #EDS diagnosis was anything but linear. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @TiffanyKairos: @SimplyKristyD @patientchat I can understand that. It took years for my neurologist to finally conclude that I had Refractory Epilepsy. Several tests, hospital stays etc. #epilepsy #patientchat |
 | Luke @xman_10 RT @TiffanyKairos: It is my hope to shine a light on those who are affected by #epilepsy in any capacity. Whether patient, caregiver, physician etc. #patientchat |
| Simply Kristy @SimplyKristyD @scrufton73 @FibroFlutters Hi Carole! #patientchat |
| Patient Empowerment Network @power4patients RT @ohhiialexa: @SimplyKristyD I’m very pro-technology. I live in a rural area, and it helps level the playing field by giving me access to more things than I have in my area. But our internet access/reliability must also improve! #patientchat |
| Alan Brewington @abrewi3010 @SimplyKristyD I’m pro tech but I don’t think it does a good job adapting to my story. Especially with so many specialists and payer types. #patientchat |
| Simply Kristy @SimplyKristyD @ohhiialexa I understand what you mean about equal access to care based on rural vs urban living. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: What do you think #patientchat? |
 | Carolyn Holmes @HolmesCarolyn23 RT @patientchat: What do you think #patientchat? |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos In the early years of my #epilepsy journey, I probably went through 3-4 neurologists due to the fact of receiving no respect or proper care. #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat If it makes you feel any better, I approach it the same way you do. As a parent who has a rare disease, one day at a time is sometimes the best approach #patientchat |
| Alexa Jett 🦋 @ohhiialexa I’d like to throw out advocacy and self-advocacy burnout. It’s very real, and I don’t think we acknowledge it enough. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Things I'm grateful for in 2020: ✅ @propublica #SurgeonScorecard ✅ Ortho surgeon who *perfectly* replaced my knee ✅ Being #epatient = participating pre- & post-op to drive my own +outcome ✅ Bonus comedy = 100% mobility, but I can't go anywhere (TYVM #COVID!) 🤣 #patientchat |
| Simply Kristy @SimplyKristyD @abrewi3010 I agree on the tech needing to adapt to the patient journey/story. Just like healthcare, digital health technology can't be a one-size fits all solution. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @SimplyKristyD It's been a must have for me, Kristy! I'm largely at home (like so many others, & starting well before Covid), so digital tools have been a must have fore my empowerment. From #telehealth to #patientchat to general interactions & outreach, I'm very thankful for it all. |
| Diverse Health Hub @DHealthhub @TiffanyKairos Wow, Tiffany I am so sorry to hear that. #patientchat |
| Simply Kristy @SimplyKristyD @TiffanyKairos The journey to diagnosis can be a long and frustrating one. I'm sorry to hear you had to go through that. #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @ohhiialexa Excellent point. Self-care is essential. We can’t give our best if we aren’t at our best. #patientchat |
| Alan Brewington @abrewi3010 @ohhiialexa Advocacy is to competitive anymore. If you are not the “it” advocate you don’t get the cool opportunities it seems. To much publish or parish in an odd way #patientchat |
| Diverse Health Hub @DHealthhub @ohhiialexa So true Alexa. Remember everyone, take time out of your weekend to relax. You owe it to yourself. #SelfCare #Patientchat |
| Alexa Jett 🦋 @ohhiialexa @TiffanyKairos 100%! I’ve been working hard at taking social media breaks, eating well, exercise, and regular meditation. #patientchat |
| Simply Kristy @SimplyKristyD @scrufton73 @TiffanyKairos @patientchat Yes, I was told many times by healthcare providers that I was too young to be experiencing what I was #patientchat |
| Patient Chat @patientchat RT @DHealthhub: @ohhiialexa So true Alexa. Remember everyone, take time out of your weekend to relax. You owe it to yourself. #SelfCare #Patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @DHealthhub Thanks so much. Little did I know that along my journey I would discover my calling. Thankful to be alive. #epilepsy #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientsfirstcd @SimplyKristyD @TiffanyKairos One of my passion projects is enhancing the patient-provider relationship through effective patient education. :) #patientchat |
| Alexa Jett 🦋 @ohhiialexa I’m upset that I can only re-tweet this once. #patientchat |
| Alexa Jett 🦋 @ohhiialexa YES! #patientchat |
| Simply Kristy @SimplyKristyD @power4patients I would love to hear more about your tool and the market you are addressing. Who knows, maybe there could be an opportunity for some collaboration with our tool, @cshealthapp #patientchat |
| Alexa Jett 🦋 @ohhiialexa @MaryOCMack @abrewi3010 So unbelievably true!! #patientchat https://t.co/Clavedjtqa |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @DHealthhub @ohhiialexa Yes! #patientchat https://t.co/xb2NDaqtza |
| Simply Kristy @SimplyKristyD @RareDiseaseDad I am largely at home as well. The only real silver lining I can see out of Covid is the quick adoption for things like #virtualcare & #telehealth. We have seen adoption of technology from physicians that would have taken years to gain buy-in in normal times. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Did someone say ... #PatientEngagement? https://t.co/NgDErU3EGm #patientchat |
| Alan Brewington @abrewi3010 @MightyCasey @propublica Being an #epatient during all my pre Orthopedic surgeries has been a major factor in my success. Proper surgery prep isn’t discussed enough #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @TiffanyKairos: @DHealthhub Thanks so much. Little did I know that along my journey I would discover my calling. Thankful to be alive. #epilepsy #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa Absolutely! I'm discovering how emotionally taxing it is to write or recount/tell my story, & that effects me physically. I won't stop, because what I wouldn't have given to know I wasn't alone through my symptom/diagnostic journey, but I'm aware & try to plan now. #patientchat |
 | Mary MACK @MaryOCMack I have a rare disease:LMNA defect. I learned fast to assume you are slipping through the cavernous “cracks.”Be all over it, read up,etc. because much of the time your dr isn’t. (My experience w/some docs) #patientchat |
| Alexa Jett 🦋 @ohhiialexa @MightyCasey @stales is one amazing human!! #patientchat |
| Patient Empowerment Network @power4patients RT @RareDiseaseDad: @ohhiialexa Absolutely! I'm discovering how emotionally taxing it is to write or recount/tell my story, & that effects me physically. I won't stop, because what I wouldn't have given to know I wasn't alone through my symptom/diagnostic journey, but I'm aware & try to plan now. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @abrewi3010 @propublica So true. I prepped for two years for that TKA. Why I got the +outcome I did! #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos I invite those of you on Instagram to follow if you would like to learn more about my journey with #epilepsy! ☺️💜#patientchat https://t.co/2pxCW2kYwc |
| Janice Tufte @Hassanah2017 I am grateful I was able to travel across country 5xs before Covid19 hit my Seattle region 2.29.20 that I have continued to stay engaged in my work despite many challenges, grateful to all individuals who have supported me one way or another! #patientchat https://t.co/INuApjOqJO |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad Thank you so much for saying this! It’s important that we share our stories, to help change the system and help others. But it can be very hard to relive it constantly! #patientchat |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @ohhiialexa You may want to chat with @MightyCasey on that front, if you haven't already. Humor is not only healing for many, it can also help educate. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @Hassanah2017: I am grateful I was able to travel across country 5xs before Covid19 hit my Seattle region 2.29.20 that I have continued to stay engaged in my work despite many challenges, grateful to all individuals who have supported me one way or another! #patientchat https://t.co/INuApjOqJO |
| Simply Kristy @SimplyKristyD @TiffanyKairos Have followed from our business account. Will follow from my personal account once I can access my account again (long story) #patientchat |
| Patient Chat @patientchat @Hassanah2017 Love the picture! #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @ohhiialexa @RareDiseaseDad Yes it’s empowering and inspiring to share our stories! We may very well be encouraging others along the way! #patientchat |
| Patient Chat @patientchat RT @TiffanyKairos: @ohhiialexa @RareDiseaseDad Yes it’s empowering and inspiring to share our stories! We may very well be encouraging others along the way! #patientchat |
 | Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with others on the topic. |
| Alan Brewington @abrewi3010 @MightyCasey @propublica I skied 8 weeks after my hip replacement surgery. The pre work was the reason why #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ohhiialexa: @RareDiseaseDad Thank you so much for saying this! It’s important that we share our stories, to help change the system and help others. But it can be very hard to relive it constantly! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ohhiialexa: I’d like to throw out advocacy and self-advocacy burnout. It’s very real, and I don’t think we acknowledge it enough. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @TiffanyKairos: I invite those of you on Instagram to follow if you would like to learn more about my journey with #epilepsy! ☺️💜#patientchat https://t.co/2pxCW2kYwc |
| Simply Kristy @SimplyKristyD @ohhiialexa @TiffanyKairos Social media is great. But breaks are definitely needed (at least for me) #patientchat |
| Patient Chat @patientchat #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @SimplyKristyD: Question for #patientchat - how do patients feel about utilizing digital tools to assist with patient empowerment? |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @RareDiseaseDad: @ohhiialexa Absolutely! I'm discovering how emotionally taxing it is to write or recount/tell my story, & that effects me physically. I won't stop, because what I wouldn't have given to know I wasn't alone through my symptom/diagnostic journey, but I'm aware & try to plan now. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @MaryOCMack: I have a rare disease:LMNA defect. I learned fast to assume you are slipping through the cavernous “cracks.”Be all over it, read up,etc. because much of the time your dr isn’t. (My experience w/some docs) #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @TiffanyKairos: It is my hope to shine a light on those who are affected by #epilepsy in any capacity. Whether patient, caregiver, physician etc. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @ohhiialexa: After the last virtual #patientchat, I’ve been thinking a lot about comedy and cancer/chronic illness. I enjoyed hearing Summer talk about using improv to cope, and I’ve met a few other improv/comedy-as-therapy people in the last 2 weeks! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @coffeemommy @ohhiialexa Well, I *did* write that comedy-heavy report on my trip to Cancer Camp through the healthcare car wash ... aka @CancerForXmas And then there's that whole Healthcare Is HILARIOUS podcast deal aka @hilarious_is Comedy/humor = my best life tool. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @SimplyKristyD @TiffanyKairos Breaks are amazing! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @carlyflumer: @patientsfirstcd @SimplyKristyD @TiffanyKairos One of my passion projects is enhancing the patient-provider relationship through effective patient education. :) #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @SimplyKristyD IMHO, digital tools don't empower us, we already have the 'power', we just need to find the best way to use it. One size fits no one but digital tools certainly have their place in people taking control over their own health & directing their own healthcare. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: I'm Kara from @power4patients and I am excited to hear what everyone has on their mind today! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @DHealthhub: @ohhiialexa So true Alexa. Remember everyone, take time out of your weekend to relax. You owe it to yourself. #SelfCare #Patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @scrufton73: |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @power4patients: @ohhiialexa I'm so glad to hear your feedback! Summer is one of our @power4patients Network Managers, as is the awesome @carlyflumer. We're planning to expand the program in 2021 so please stay tuned #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @MightyCasey @ohhiialexa @CancerForXmas @hilarious_is Yep! Thanks for making my point. 😉 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 @ohhiialexa Thinking about this with my teacher/professional development hat: no matter how many people I was teaching, I always tried to bring the same energy/effort/message. If my audience is even 1 person & they benefit, that's a win. I'm okay not being the "it" advocate. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 @ohhiialexa I'm not discounting your point, Alan. I agree about how it can come across/be. Admittedly, I'm green when it comes to advocacy, but publish or parish resonates. It brings me back to my days teaching at the university level, where that certainly is the reality! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @MightyCasey @coffeemommy I guess I was remembering the anniversary edition! I’ll absolutely do that. #patientchat |
 | CalamityJane @JaneCanary19 RT @patientchat: Today on #patientchat we offer you the "mic". You are free to ask ?’s, make comments, share your story, etc. |
 | Tichaona Nhizwa @TichaonaNhizwa RT @TiffanyKairos: In the early years of my #epilepsy journey, I probably went through 3-4 neurologists due to the fact of receiving no respect or proper care. #patientchat |
| Simply Kristy @SimplyKristyD @scrufton73 @ohhiialexa @TiffanyKairos No judgement here! I agree that it's always time for a nap :) #patientchat |
| Simply Kristy @SimplyKristyD @scrufton73 @ohhiialexa @TiffanyKairos So jealous! I am overdue for my nap today #patientchat |
| Alexa Jett 🦋 @ohhiialexa @scrufton73 @SimplyKristyD @TiffanyKairos Things like second breakfast, early naps, and comfy clothes all day are very underrated, friend! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @Crohnoid Oh my! Wow 😳 #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientsfirstcd @DHealthhub Making the decision to advocate is saying that you refuse to let your condition take the wheel of your life and you are going to raise your voice to create awareness. #patientchat |
| Patient Chat @patientchat @ohhiialexa @scrufton73 @SimplyKristyD @TiffanyKairos Yess to second breakfast? #patientchat https://t.co/HcZ8c0Lip9 |
| Diverse Health Hub @DHealthhub RT @TiffanyKairos: @patientsfirstcd @DHealthhub Making the decision to advocate is saying that you refuse to let your condition take the wheel of your life and you are going to raise your voice to create awareness. #patientchat |
| Patient Chat @patientchat Thank you all for sharing so openly today! Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Alexa Jett 🦋 @ohhiialexa @patientchat @scrufton73 @SimplyKristyD @TiffanyKairos I am a BIG believer in second breakfasts!! #patientchat https://t.co/swTpFYEpaL |
| Patient Chat @patientchat RT @TiffanyKairos: @patientsfirstcd @DHealthhub Making the decision to advocate is saying that you refuse to let your condition take the wheel of your life and you are going to raise your voice to create awareness. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey I'll admit that advocacy comes at a cost. I no longer self-ID as "advocate," I'm an activist. Since I'm basically healthy (outside cancer history and geezerdom) I'm on the front lines of ALL of the humans. #datarightsarehumanrights #belikelight #patientchat |
| Patient Chat @patientchat Also, feel free to share links to your blogs or other good sites for what you are passionate about :) #patientchat |
 | IFTIKHAR MD ZIA @thisiszia RT @TiffanyKairos: @ohhiialexa @RareDiseaseDad Yes it’s empowering and inspiring to share our stories! We may very well be encouraging others along the way! #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat So glad to Vns with you all today! 💜 #patientchat |
| Alexa Jett 🦋 @ohhiialexa @MightyCasey I like this perspective a lot! #patientchat |
| CalamityJane @JaneCanary19 RT @ohhiialexa: I’d like to throw out advocacy and self-advocacy burnout. It’s very real, and I don’t think we acknowledge it enough. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @Crohnoid @RareDiseaseDad @ohhiialexa Exactly how I wrote @CancerForXmas 🤣🤣 #patientchat |
| CalamityJane @JaneCanary19 RT @RareDiseaseDad: @ohhiialexa Absolutely! I'm discovering how emotionally taxing it is to write or recount/tell my story, & that effects me physically. I won't stop, because what I wouldn't have given to know I wasn't alone through my symptom/diagnostic journey, but I'm aware & try to plan now. #patientchat |
| CalamityJane @JaneCanary19 RT @ohhiialexa: @RareDiseaseDad Thank you so much for saying this! It’s important that we share our stories, to help change the system and help others. But it can be very hard to relive it constantly! #patientchat |
| CalamityJane @JaneCanary19 RT @Crohnoid: |
| Simply Kristy @SimplyKristyD @patientchat Would love to share our app with everyone. You can learn more about it here :) https://t.co/4hBHPDmXng #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ohhiialexa ^ FOR all of the humans f'ing fingers! #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @SimplyKristyD @patientchat Will do! ☺️🙌🏼 #patientchat |
| Simply Kristy @SimplyKristyD Another amazing #patientchat. Thanks to everyone who participated. See you in 2 weeks :) #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @coffeemommy @MightyCasey @ohhiialexa @CancerForXmas @hilarious_is I tried to use/infuse some comedy into my 1st blog. It's a big part of who I am...jokes, comedies, & liking to laugh. My sense of humor & taste in movies/shows isn't for everyone, but it works for me (& maybe some who tolerate me can relate).😂#patientchat https://t.co/3mmcBxbDn6 |
| Alexa Jett 🦋 @ohhiialexa CT: there is never a dull #patientchat! We have an amazing community. |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. I will tweet out the transcript about 15 minutes past the hour |
| Simply Kristy @SimplyKristyD @patientsfirstcd @patientchat Thanks so much. Let me know if you have any questions. :) #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Been great hangin' w/you all today! Remember: vote early if you can! I did that today. Keep your head on a swivel. And stay frosty, friends =) #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @RareDiseaseDad @coffeemommy @ohhiialexa @CancerForXmas @hilarious_is Dude, your handle tees you up solid for #dadjokesfriday too =) #patientchat |
| Patient Chat @patientchat Interested in co-hosting an Empowered #patientchat in 2021? Reach out to us here or through @power4patients |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, October 16th. Hope to see you there! https://t.co/4Zvlio42gf |
| Simply Kristy @SimplyKristyD @ohhiialexa Yes, yes we do. #patientchat https://t.co/DDezSzP72y |
| Adam Johnson - DadVocate @RareDiseaseDad @MightyCasey @Crohnoid @ohhiialexa @CancerForXmas Thank you for the encouragement! I really appreciate it! 💚 I definitely won’t stop...just have to figure out how to balance everything & still make time without overdoing it. It is cathartic, indeed! And I might have to think about that book idea. Intriguing! #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @MightyCasey @RareDiseaseDad @ohhiialexa @CancerForXmas @hilarious_is THAT is the tweet. Right there. All day. Every day. In #patientchat and in #life |
| CalamityJane @JaneCanary19 RT @patientsfirstcd: |
| Adam Johnson - DadVocate @RareDiseaseDad @scrufton73 Thanks, Carole! Great to "meet" you today on the #patientchat. Take care! |
| Adam Johnson - DadVocate @RareDiseaseDad RT @TiffanyKairos: @patientsfirstcd @DHealthhub Making the decision to advocate is saying that you refuse to let your condition take the wheel of your life and you are going to raise your voice to create awareness. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 I forgot about #patientchat!🤦🏿♀️ But in my defense, it has been a pretty looong week over here!🖐🏿 Seeing awesome Tweets from it tho! It's always a beautiful & reassuring thing when patients can come together, share, be heard & be empowered.🤎❤ #patientchat is an amazing program! |
#patientchat content from Twitter.