#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat @ADanGrenier We will miss you. Thank you for sharing and encouraging others to join us! Hope you have a wonderful weekend ahead! #PatientChat |
 | Marni Cartelli @Purrfectly_Rare RT @patientchat: Happy New Year! Join us for our next Empowered #PatientChat, โBuilding Power Through Your Storyโ on Friday, 01/14 @ 10AM PT/ 1PM ET! https://t.co/FUh6UAG4ca |
| Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empower patients. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat Iโm Nykema from @power4patients and Iโm looking forward to our first #PatientChat of 2022! |
| Marni Cartelli @Purrfectly_Rare #PatientChat I'm Marni, a #RareDisease/#chronicillness patient from Long Island, NY. I've recently taken a step back from #advocacy to focus on my family & self but still love engaging in the community. |
| Patient Chat @patientchat Please continue intros and welcomes. Iโll share a couple โground 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 |
| Patient Chat @patientchat @Purrfectly_Rare Hi Marni, thank you for joining us today! Happy you can still find time to engage in the community #PatientChat |
| Patient Chat @patientchat @LifeAccrdingLiz Always happy to have you joining us, Liz! #PatientChat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #PatientChat |
| Patient Chat @patientchat Today's #patientchat is a โBuilding Power Through Your Storyโ https://t.co/1xT3xTwDQl |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of your answer - hard to remember but helpful #patientchat |
 | Lorrie @LorrieForseth @patientchat Good morning, I'm Lorrie from Vancouver Canada #patientchat ๐ |
| Patient Chat @patientchat Topic 1 coming soon.... #PatientChat |
| Patient Chat @patientchat @LorrieForseth Happy New Year, Lorrie! Thanks for joining #PatientChat |
| Lorrie @LorrieForseth @patientchat Thank you , Happy New Year to you as well :) #patientchat |
| Patient Chat @patientchat T1: Why is it important for patients and/or care partners to share their stories with others? #patientchat https://t.co/qd4eqjdN0j |
| Lorrie @LorrieForseth @patientchat A1 : It's so very important for patients / caregivers to share their stories with others because , your story may encourage another to not give up hope . #patientchat |
| Lorrie @LorrieForseth RT @patientchat: Join us for a โBuilding Power Through Your Storyโ Empowered #PatientChat TODAY @ 10AM PT/ 1 PM ET! https://t.co/1xT3xTwDQl https://t.co/Yhm3Xlex9d |
| Patient Chat @patientchat @LorrieForseth So true, Lorrie. And not only is it beneficial for the patient and/or caregiver community to hear the stories of others but all who advocate including healthcare professionals. #PatientChat |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: Why is it important for patients and/or care partners to share their stories with others? #patientchat https://t.co/qd4eqjdN0j |
| Lorrie @LorrieForseth @patientchat Very true, that's a good reason to keep a journal , in case you forget vital information, it's written down. #patientchat |
| Patient Chat @patientchat Topic 2 coming soon.... #PatientChat |
| Marni Cartelli @Purrfectly_Rare A1. #patientchat I think it's important 4 many reasons 1) It let's others in community know they aren't alone 2) It can B emotionally cathartic to talk about ur experience & how you are feeling (if you are ready to) 3) Normalizes these experiences in society (we R less outliers) |
| Patient Empowerment Network @power4patients RT @Purrfectly_Rare: A1. #patientchat I think it's important 4 many reasons 1) It let's others in community know they aren't alone 2) It can B emotionally cathartic to talk about ur experience & how you are feeling (if you are ready to) 3) Normalizes these experiences in society (we R less outliers) |
 | Alan Brewington @abrewi3010 A1 Patient stories make medical education come to life. Without our stories itโs just academic. #patientchat |
| Patient Chat @patientchat T2: If you werenโt always comfortable, when and how did you become comfortable sharing your story? #patientchat https://t.co/6d9cDkf9KH |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz It's hard to treat without understanding. This branches out in *many ways*. From general awareness to friends and family, All the way up to, research hypotheses, and getting support from others in ways you never imagined. Especially, in the rare disease communities. |
| Patient Chat @patientchat #PatientChat |
| Marni Cartelli @Purrfectly_Rare T2 #patientchat I've always been comfortable sharing my story but lately I'm worried that sharing MY story is also sharing my family's story, & I'm more aware of how uncomfortable THEY R w certain aspects I want 2 share It's my biggest struggle right now, walking the line |
| Lorrie @LorrieForseth @patientchat A1: It definitely took a bit to share my caregiver story, not everyone wants to hear it . I now go by the quote " speak your mind , even if your voice shakes " . I really hope I encourage even one person through my journey. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: If you werenโt always comfortable, when and how did you become comfortable sharing your story? #patientchat https://t.co/6d9cDkf9KH |
| Marni Cartelli @Purrfectly_Rare @LifeAccrdingLiz I love this. Understanding... I think I'm going to adopt the motto "Raise understanding not just awareness" #patientchat |
| Patient Chat @patientchat @Purrfectly_Rare Appreciate you sharing that point of view, Marni #PatientChat |
| Alan Brewington @abrewi3010 A2 I got tired of living in #ChronicPain so I decided it was time to ask for help. The more help I received the better my storytelling capabilities became. #patientchat |
| Patient Chat @patientchat @LorrieForseth Love that quote, Lorrie! #PatientChat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz @Purrfectly_Rare Thanks, understanding + research = treatments + cures. #patientchat!! It's also hard to fix a tire if you don't know how. So, we can't cure what we don't understand. Or, at least have the tools. |
| Patient Chat @patientchat T3: Where can you go to share your story? Where do you suggest others start? #PatientChat https://t.co/VeiyINebkO |
| Marni Cartelli @Purrfectly_Rare @patientchat Honestly, I'm just learning My family supported my advocacy/storytelling bc they knew I needed it 2 get through the DX Recently, I found out how much they were hurting from some of it I'm in a better place where getting it out isn't always as important #patientchat |
| Lorrie @LorrieForseth @patientchat My voice still shakes , but I want to be stronger for others who may not have a voice ( yet ) . Invisible illness like #Epilepsy / #SUDEP need to be talked about so much more .#patientchat |
 | EpMatch @epstrong RT @LorrieForseth: @patientchat My voice still shakes , but I want to be stronger for others who may not have a voice ( yet ) . Invisible illness like #Epilepsy / #SUDEP need to be talked about so much more .#patientchat |
| Marni Cartelli @Purrfectly_Rare A3 #patientchat I love reading the stories on @TheMightySite or @PatientWorthy Twitter is great for connecting but the character limits make it hard to tell a story story I think anywhere ppl feel safe is a good place to go |
 | Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @patientchat: T2: T2: If you werenโt always comfortable, when and how did you become comfortable sharing your story? #patientchat https://t.co/6d9cDkf9KH |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A3: I started big through lobbying through @RareAdvocates, and disease-specific event Was., DC Hill events. Starting small with Facebook groups will help you get comfy in your skin. (I met one of my besties through a mitochondrial disease Facebook group.) |
| Lorrie @LorrieForseth @patientchat A3 : Social media channels like , Twitter , Instagram, YouTube, tiktok, Facebook as well as in real , if you get the chance to hang up posters , give a talk in schools etc . But beware of those who choose to make fun of you. Not everyone will understand. #patientchat . #educate |
| Patient Chat @patientchat #PatientChat |
| Patient Chat @patientchat Topic 4 coming soon.... #PatientChat |
| Alan Brewington @abrewi3010 A3 Look at your local legislature. Health Committees often give the public opportunities to share. Conferences like @StanfordMedX, conferences should offer training and sharing opportunities like #Medx #patientchat |
| Patient Chat @patientchat T4: What would you say to patients and/or care partners who are hesitant to share their story? #PatientChat https://t.co/6Ue9Eq3ZXv |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What would you say to patients and/or care partners who are hesitant to share their story? #PatientChat https://t.co/6Ue9Eq3ZXv |
| Marni Cartelli @Purrfectly_Rare A4 #patientchat Really think about Y u hesitate If u aren't ready that=100% fine & comm needs 2 respect that If it's bc u dont know how, or best way,reach out. There is help If it's bc u think u'll b bad, don't worry! It's ur story, nobody knows it better than u! Just try |
| Patient Chat @patientchat RT @Purrfectly_Rare: A4 #patientchat Really think about Y u hesitate If u aren't ready that=100% fine & comm needs 2 respect that If it's bc u dont know how, or best way,reach out. There is help If it's bc u think u'll b bad, don't worry! It's ur story, nobody knows it better than u! Just try |
| Patient Chat @patientchat Topic 5 coming soon... #PatientChat |
| Lorrie @LorrieForseth @patientchat A1 : A few months ago , @FINALLEVEL put up a quote on Twitter, so I decides to screen cap it . It's exactly how anyone should feel if they are hesitant in sharing their story . You may just help someone. #patientchat https://t.co/2k04drUmID |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T4: "Good things never come from in your comfort zone", or something like that. Our misery, and less than stellar days *can* be flipped and turned into butterflies. YOU never know without trying. Being vulnerable can be hard. Risks can be scary. #patientchat. |
| Patient Chat @patientchat RT @LorrieForseth: @patientchat A1 : @patientchat A1 : A few months ago , @FINALLEVEL put up a quote on Twitter, so I decides to screen cap it . It's exactly how anyone should feel if they are hesitant in sharing their story . You may just help someone. #patientchat https://t.co/2k04drUmID |
| Lorrie @LorrieForseth @aggievic14 @patientchat Definitely are not enough caregivers stories for sure . #patientchat |
| Patient Chat @patientchat T5: What words of caution do you have for anyone who wants to share their story? #PatientChat https://t.co/dSA1DXV7xb |
| Marni Cartelli @Purrfectly_Rare A5 #patientchat There will always b trolls! ALWAYS! Share ur story knowing this. B prepared 2 ignore hurtful things said or at very least, not take them personally U will need 2 learn 2 distinguish -things meant well but phrased horribly -honest attempts at discourse V Trolls! |
| Alan Brewington @abrewi3010 A5 vulnerability is also a skill set. Being vulnerable makes for good stories and content. Push this skill in order to learn but stop before it hurts you. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T4: #patientchat. Twitter has hashtags to start. Just try #patient...and go from there. Also, following each here on this chat helps expand your village. Power comes in numbers! |
| Marni Cartelli @Purrfectly_Rare @aggievic14 @patientchat Love love love this! We often times get so caught up in encouraging people 2 share, we don't stop to evaluate if they are ready Or If there will B any consequences 4 them doing so #patientchat |
| Patient Chat @patientchat RT @Purrfectly_Rare: A5 #patientchat There will always b trolls! ALWAYS! Share ur story knowing this. B prepared 2 ignore hurtful things said or at very least, not take them personally U will need 2 learn 2 distinguish -things meant well but phrased horribly -honest attempts at discourse V Trolls! |
| Lorrie @LorrieForseth @patientchat A5 : I caution to watch for stigmas . Example; there are people out there unfortunately who think #Epilepsy is contagious, It is not . Also ; with Epilepsy, not everyone falls to the floor & shakes , do your research. There are over 40 different types of seizures. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #PatientChat |
 | Victoria (she/her/ella) @aggievic14 RT @LorrieForseth: @patientchat A5 : @patientchat A5 : I caution to watch for stigmas . Example; there are people out there unfortunately who think #Epilepsy is contagious, It is not . Also ; with Epilepsy, not everyone falls to the floor & shakes , do your research. There are over 40 different types of seizures. #patientchat |
| Patient Chat @patientchat RT @abrewi3010: A1 Patient stories make medical education come to life. Without our stories itโs just academic. #patientchat |
 | Inkgrrl stands with Ukraine๐๏ธ๐๐๐ @inkgrrl RT @patientchat: T2: T2: If you werenโt always comfortable, when and how did you become comfortable sharing your story? #patientchat https://t.co/6d9cDkf9KH |
| Lorrie @LorrieForseth @patientchat C/T ( Closing thoughts ) Be the best patient advocate you know how to be , you're going to make mistakes, be corrected & challenged by others. Please keep going, encourage others who will listen, educate yourself . Your story matters , keep talking. #Epilepsy #patientchat |
| Patient Chat @patientchat #PatientChat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Patient Chat @patientchat If you have any topics suggestions or would like to guest host an upcoming #PatientChat -- please feel free to reach out! |
| Marni Cartelli @Purrfectly_Rare @LifeAccrdingLiz 100% I know I have said things wrong and come across in ways I never meant to on a few (or many), occasions When it was pointed out I rephrased & apologized for how I said it. I didn't get angry or defensive We all have 2 allow 4 some missteps by others-it happens #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz T5: "I can do hard things", is one of my mantras. You know it's already true, "and" can be applied to many other contexts. #patientchat. |
| Patient Chat @patientchat Stay tuned for our next Empowered #PatientChat on Friday, January 28th @ 10 AM PT/ 1 PM ET! https://t.co/YykO2PEWyY |
| Patient Chat @patientchat #PatientChat |
| Patient Chat @patientchat #PatientChat |
| Marni Cartelli @Purrfectly_Rare RT @abrewi3010: A1 Patient stories make medical education come to life. Without our stories itโs just academic. #patientchat |
| Lorrie @LorrieForseth @aggievic14 @patientchat Most welcome Victoria . 65 million people plus worldwide + their families fight Epilepsy everyday & talk about the challenges of erasing stigmas . #Epilepsy is so much more than just seizures. Just wanted to add that. #patientchat. |
| Victoria (she/her/ella) @aggievic14 RT @LorrieForseth: @aggievic14 @patientchat Most welcome Victoria . 65 million people plus worldwide + their families fight Epilepsy everyday & talk about the challenges of erasing stigmas . #Epilepsy is so much more than just seizures. Just wanted to add that. #patientchat. |
 | Lou Waters (she/her) ๐ด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ๐ช๐บ๐ณ๏ธโ๐๐ณ๏ธโโง @LouWaters_QI I would like to twitter introduce the #QITwitter and #PatientChat communities โค @patientchat https://t.co/PzLm0IDzwh |
| Victoria (she/her/ella) @aggievic14 RT @LorrieForseth: @patientchat C/T ( Closing thoughts ) Be the best patient advocate you know how to be , you're going to make mistakes, be corrected & challenged by others. Please keep going, encourage others who will listen, educate yourself . Your story matters , keep talking. #Epilepsy #patientchat |
| Patient Chat @patientchat @LouWaters_QI #QITwitter meets #PatientChat! https://t.co/xZBmR6qiZj |
| Lou Waters (she/her) ๐ด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ๐ช๐บ๐ณ๏ธโ๐๐ณ๏ธโโง @LouWaters_QI RT @patientchat: @LouWaters_QI #QITwitter meets #PatientChat! https://t.co/xZBmR6qiZj |
| Lorrie @LorrieForseth RT @patientchat: Stay tuned for our next Empowered #PatientChat on Friday, January 28th @ 10 AM PT/ 1 PM ET! https://t.co/YykO2PEWyY |
| Lou Waters (she/her) ๐ด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ๐ช๐บ๐ณ๏ธโ๐๐ณ๏ธโโง @LouWaters_QI @patientchat Maybe we can work on a joint chat sometime ๐ค #QITwitter #PatientChat #QITwitter is a global improvement movement for health and care |
| Patient Chat @patientchat #PatientChat |
| Patient Chat @patientchat @LouWaters_QI Definitely. I will send you a DM shortly if you donโt mind. Thanks for reaching out! #PatientChat |
 | PF Anderson @pfanderson@disabled.social @pfanderson RT @abrewi3010: A5 vulnerability is also a skill set. Being vulnerable makes for good stories and content. Push this skill in order to learn but stop before it hurts you. #patientchat |
| Patient Chat @patientchat #PatientChat |
#patientchat content from Twitter.