#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
– ().
See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat You can find the topics we’ll cover on today’s Empowered #patientchat with @RMCAwareness: https://t.co/KoZ2dAKJ0r |
| 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 We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat! 😊 |
 | Patient Empowerment Network @power4patients Hi #patientchat! Kara from @power4patients here and excited to chat and learn from everyone |
 | R.M.C. Inc @RMCAwareness Hi, I’m Cora! RMC Network Manager for @power4patients and founder of RMC Inc (https://t.co/hu1RrC9bIp) #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Amanda G @LAlupusLady Hi Amanda a #lupus warrior from Southern California. #patientchat |
| Patient Chat @patientchat @RMCAwareness @power4patients Hi Cora, so happy you could host this #patientchat today! |
| Patient Chat @patientchat @LAlupusLady Hi Amanda, happy you could be here today 😊 #patientchat |
| R.M.C. Inc @RMCAwareness @patientchat @power4patients Thank you for the invitation, I’m happy to be here! #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 You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| Amanda G @LAlupusLady RT @patientchat: You can find the topics we’ll cover on today’s Empowered #patientchat with @RMCAwareness: You can find the topics we’ll cover on today’s Empowered #patientchat with @RMCAwareness: https://t.co/KoZ2dAKJ0r |
| Patient Chat @patientchat Today's topic is a “Rare but Not Invisible: Finding Your Community” Empowered #patientchat https://t.co/KoZ2dAKJ0r |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi everyone. I'm Adam, a guy with a #RareDisease called mitochondrial myopathy, with a side of extrinsic restrictive disease. I try to combine any Dad skills I might have with my attempts to be an Advocate, so I call myself a #DadVocate. Looking forward to the #PatientChat today. |
| Patient Chat @patientchat @RareDiseaseDad Adam, it’s always nice to have you here! Hoping all is well and wishing you a wonderful weekend! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @RMCAwareness @power4patients Hi Cora! Nice to see you hosting the chat today. Hope you're doing well! #PatientChat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @LAlupusLady Hi Amanda! Nice to see you here. Hope all is well! #PatientChat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz @RareDiseaseDad @patientchat :: Waves:: Hi!! Glad to have another mitochondrial disease patient here. #patientchat. |
| Patient Chat @patientchat T1: What makes community meaningful? #patientchat https://t.co/dgMRMqioaz |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What makes community meaningful? #patientchat https://t.co/dgMRMqioaz |
| Amanda G @LAlupusLady RT @patientchat: T1: T1: What makes community meaningful? #patientchat https://t.co/dgMRMqioaz |
| R.M.C. Inc @RMCAwareness T1: Understanding the diagnosis (there’s no “one size fits all” for everyone’s diagnosis) and connecting with others who have the same diagnosis. #patientchat |
| Patient Empowerment Network @power4patients T1: Shared experiences, trust, and I think, most importantly, a sense of connection #patientchat |
| R.M.C. Inc @RMCAwareness T1: Respecting patients' privacy. Don’t try to pressure them to do anything they are not comfortable with and continue to share trusted resources with each other. #patientchat |
| Amanda G @LAlupusLady T1 An engaged (online) community is created when people care and support one another. Meaningful communication happens one post at a time. Meaningful community does not fear the “deep.” #patientchat https://t.co/nZxddj7Rc0 |
| Amanda G @LAlupusLady RT @RMCAwareness: T1: T1: Understanding the diagnosis (there’s no “one size fits all” for everyone’s diagnosis) and connecting with others who have the same diagnosis. #patientchat |
| Amanda G @LAlupusLady RT @RMCAwareness: T1: T1: Respecting patients' privacy. Don’t try to pressure them to do anything they are not comfortable with and continue to share trusted resources with each other. #patientchat |
| Patient Empowerment Network @power4patients RT @LAlupusLady: T1 An engaged (online) community is created when people care and support one another. Meaningful communication happens one post at a time. Meaningful community does not fear the “deep.” #patientchat https://t.co/nZxddj7Rc0 |
| Amanda G @LAlupusLady RT @power4patients: T1: T1: Shared experiences, trust, and I think, most importantly, a sense of connection #patientchat |
 | Alan Brewington @abrewi3010 A1 community is meaningful if it’s prevents a patient from feeling alone. No one should ever feel alone #patientchat |
 | Melissa VanHouten @melissarvh Relevant information & support. Working together to create change. Shared experiences - ups, downs, heartaches, & celebrations. Always feeling a part of something rather than feeling alone in the struggle. #PatientChat |
| Amanda G @LAlupusLady This. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz Firstly, is it possible to extend the chat by 15 mins? It's hard to keep up with topics and re-tweets with just 60 minutes. People might be more engaged, too #PatientChat |
| R.M.C. Inc @RMCAwareness T1: My brother was diagnosed w/ terminal kidney cancer & told nothing could be done. He got a 2nd opinion from a Dr. specializing in his cancer. 9 yrs later he is living AND cancer free! Lack of knowledge from his diagnosing Dr. made me start https://t.co/hu1RrC9bIp #patientchat |
| Alan Brewington @abrewi3010 RT @LAlupusLady: This. #patientchat |
| R.M.C. Inc @RMCAwareness RT @abrewi3010: A1 community is meaningful if it’s prevents a patient from feeling alone. No one should ever feel alone #patientchat |
| R.M.C. Inc @RMCAwareness RT @LAlupusLady: T1 An engaged (online) community is created when people care and support one another. Meaningful communication happens one post at a time. Meaningful community does not fear the “deep.” #patientchat https://t.co/nZxddj7Rc0 |
| Patient Chat @patientchat Topic 2 (T2:) coming up..... #patientchat |
| R.M.C. Inc @RMCAwareness RT @melissarvh: Relevant information & support. Working together to create change. Shared experiences - ups, downs, heartaches, & celebrations. Always feeling a part of something rather than feeling alone in the struggle. #PatientChat |
| Patient Empowerment Network @power4patients RT @melissarvh: Relevant information & support. Working together to create change. Shared experiences - ups, downs, heartaches, & celebrations. Always feeling a part of something rather than feeling alone in the struggle. #PatientChat |
| Patient Chat @patientchat T2: What resources have you used to find your community? What resources would you suggest to others? #patientchat https://t.co/wD69qVzcEu |
| Alan Brewington @abrewi3010 A1 a community should be free of silos and open to all types of ideation. How might we...? #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: What resources have you used to find your community? What resources would you suggest to others? #patientchat https://t.co/wD69qVzcEu |
 | Marni Cartelli @Purrfectly_Rare A1. #patientchat I think this answer will vary based on the person doing the answering Meaning is derived wholely & differently by individuals. 2 people put in the exact same circumstances may come away w very different experiences bc they attained dif. meanings from them. |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: #PatientChat I love how the great @TedLasso speaks to his team after a devastating soccer match loss. Obviously it's different than what we deal with as patients, but I think it’s analogous & applicable to many different communities. Here is what he says (alt text included): https://t.co/mFLngWRnZP |
| R.M.C. Inc @RMCAwareness T2: Social media platforms. I would definitely suggest social media. FB: RMC Support IG: & Twitter: RMCAwareness https://t.co/hu1RrC9bIp #patientchat |
| Alan Brewington @abrewi3010 A2 the biggest resource is fellow patients. Especially if the are vocal or active social media users. The sharing of stories is the purest form of advacacy and community #patientchat |
| Patient Chat @patientchat @stephp66 @LifeAccrdingLiz @RareDiseaseDad Hi Stephanie! Happy to have you here with us today #patientchat |
| Patient Empowerment Network @power4patients T2: Some suggestions: Use hashtags, advocacy organizations, social media, research support groups, and patient groups (@HealthUnlocked, @teaminspire, @CancerSupportHQ, and many many more) #patientchat |
| Patient Chat @patientchat RT @RareDiseaseDad: @patientchat T1: @patientchat T1: #PatientChat I love how the great @TedLasso speaks to his team after a devastating soccer match loss. Obviously it's different than what we deal with as patients, but I think it’s analogous & applicable to many different communities. Here is what he says (alt text included): https://t.co/mFLngWRnZP |
| Patient Chat @patientchat @RareDiseaseDad @TedLasso Wow, loved that Adam! Thanks for sharing. #patientchat |
| Patient Chat @patientchat #patientchat |
 | John Novack @J2Novack RT @patientchat: T1: T1: What makes community meaningful? #patientchat https://t.co/dgMRMqioaz |
| Amanda G @LAlupusLady T2 Discovered Twitter friends using the hashtag #lupus to find and connect with my online community... each condition can be found as well as using “rare” #patientchat https://t.co/6ypyzhrvkr |
| Amanda G @LAlupusLady RT @abrewi3010: A2 the biggest resource is fellow patients. Especially if the are vocal or active social media users. The sharing of stories is the purest form of advacacy and community #patientchat |
| Marni Cartelli @Purrfectly_Rare A2. #patientchat I use social media a lot, mostly Twitter & Instagram But I also go to events (when possible) on topics that interest me & meet people that way |
| Melissa VanHouten @melissarvh My community is the online world of Facebook, Twitter, & the like. Couldn't find exactly what I was looking for, so, together, we built it. Disease-related nonprofits like @IFFGD & @gimotility have been quite helpful. #PatientChat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A1: Friendships beyond a #diagnosis. An identity, having a #chronicillness vs. letting it control you. #PatientExperience medical advice. Like which CoQ10 supplement, my #POTS diagnosis. peer support, etc. #PatientChat |
| R.M.C. Inc @RMCAwareness RT @LAlupusLady: T2 Discovered Twitter friends using the hashtag #lupus to find and connect with my online community... each condition can be found as well as using “rare” #patientchat https://t.co/6ypyzhrvkr |
| Patient Chat @patientchat Topic 3 (T3:) coming up..... #patientchat |
| Melissa VanHouten @melissarvh RT @power4patients: T2: Some suggestions: T2: Some suggestions: Use hashtags, advocacy organizations, social media, research support groups, and patient groups (@HealthUnlocked, @teaminspire, @CancerSupportHQ, and many many more) #patientchat |
 | Carly Flumer (she/her) @carlyflumer Hey guys! Sorry I’m late! I’m Carly, an an #AYA #thyca patient. 🦋 #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: What makes a community meaningful is the power of each person’s story. #patientchat |
| Patient Chat @patientchat T3: How do you use your community to improve your health or the health of those you love? #patientchat https://t.co/WqCrd8ojd1 |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: How do you use your community to improve your health or the health of those you love? #patientchat https://t.co/WqCrd8ojd1 |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: Social media. I avoided it for 35 years, but after my #RareDisease & the diagnostic odyssey, I jumped in. This was during the pandemic, so it was kind of my only avenue. And the ol’ Google Machine helped me find a disease specific group. Thankful for technology! #PatientChat |
| Alan Brewington @abrewi3010 A2 look for opportunities like @StanfordMedX #Medx conference. There are more and more opportunities for patients to meet and share with conference attendees #patientchat |
| Melissa VanHouten @melissarvh RT @RareDiseaseDad: @patientchat T2: @patientchat T2: Social media. I avoided it for 35 years, but after my #RareDisease & the diagnostic odyssey, I jumped in. This was during the pandemic, so it was kind of my only avenue. And the ol’ Google Machine helped me find a disease specific group. Thankful for technology! #PatientChat |
| Amanda G @LAlupusLady T1 Storytelling matters and every patient experience is important. #patientchat |
 | Lou Waters (she/her) 🏴🇪🇺🏳️🌈🏳️⚧ @LouWaters_QI RT @patientchat: T1: T1: What makes community meaningful? #patientchat https://t.co/dgMRMqioaz |
| Alan Brewington @abrewi3010 RT @carlyflumer: T1: T1: What makes a community meaningful is the power of each person’s story. #patientchat |
| R.M.C. Inc @RMCAwareness T3: Sharing information with others. Speaking directly with doctors who understand your disease. #patientchat |
| Amanda G @LAlupusLady RT @abrewi3010: A2 look for opportunities like @StanfordMedX #Medx conference. There are more and more opportunities for patients to meet and share with conference attendees #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: Facebook, Twitter, and Instagram are places where all types of communities can be found! Shout out to @_OurOdyssey_ representing #chronic and #rare. 🦓#patientchat |
| Patient Empowerment Network @power4patients T3: At PEN, we use our community to educate and share information, research, and stories so patients can advocate for the best care #patientchat |
| R.M.C. Inc @RMCAwareness RT @power4patients: T3: T3: At PEN, we use our community to educate and share information, research, and stories so patients can advocate for the best care #patientchat |
| Alan Brewington @abrewi3010 A3 a community should be liked a warm blanket, a great way to escape being chronic and just be you. Even the most active or engaged leaders need an escape so they can avoid the beast for a minute or 2. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @Purrfectly_Rare I can't wait to be able to get to in person events! I came into the #RareDisease space after the pandemic began, so I still feel a disconnect in some ways. Also, I'm a people person, & while I'm thankful for technology, there's no substitute for in person. #PatientChat |
| Amanda G @LAlupusLady T3 The @healthevoices community of friends and patient leaders has helped me understand how to be a better advocate and caretaker. Stories lead to compassion and awareness. #patientchat |
| R.M.C. Inc @RMCAwareness RT @abrewi3010: A3 a community should be liked a warm blanket, a great way to escape being chronic and just be you. Even the most active or engaged leaders need an escape so they can avoid the beast for a minute or 2. #patientchat |
| Marni Cartelli @Purrfectly_Rare A3. #patientchat No matter how much I wish it, ppl outside comm just don't get it. I realize that & I stopped trying 2 make them get it. This comm. gets it. I come 2 them 4 support I need when I need some1 2 get it It's taken lots of stress off my relationships outside the comm |
| Marni Cartelli @Purrfectly_Rare RT @patientchat: Join us for a “Rare but Not Invisible: Join us for a “Rare but Not Invisible: Finding Your Community” Empowered #patientchat on Friday, April 16th at @ 10 AM PT| 1 PM ET with our RMC Network Manager, Cora Connor (@RMCAwareness)! https://t.co/KoZ2dAKJ0r https://t.co/J5cWcJajrg |
| Carly Flumer (she/her) @carlyflumer T3: Patient education is key to improving healthcare outcomes. Sharing stories about different side effects and symptoms help others feel like they’re a part of a larger community. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @LifeAccrdingLiz Friendships beyond a diagnosis...love that, Liz! #PatientChat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A2: #FACEBOOK for #disease specific. @Twitter for the larger #RareDisease #community !! #RareDiseaseTruth #SocialMedia #patientchat |
| Melissa VanHouten @melissarvh We share credible resources & information re proper diagnosis & effective treatments. Help each other advocate for better outcomes (individually & as a community) & support each other emotionally (better mental health). #PatientChat |
| John Novack @J2Novack RT @patientchat: T3: T3: How do you use your community to improve your health or the health of those you love? #patientchat https://t.co/WqCrd8ojd1 |
| Amanda G @LAlupusLady T3 Thanks to @healthevoices impact Fund during May, I will be telling my stories, interviewing lupus warriors and raising awareness using #LupusWithFlair #patientchat |
| Melissa VanHouten @melissarvh RT @RMCAwareness: T3: T3: Sharing information with others. Speaking directly with doctors who understand your disease. #patientchat |
| Amanda G @LAlupusLady RT @power4patients: T3: T3: At PEN, we use our community to educate and share information, research, and stories so patients can advocate for the best care #patientchat |
| Amanda G @LAlupusLady RT @abrewi3010: A3 a community should be liked a warm blanket, a great way to escape being chronic and just be you. Even the most active or engaged leaders need an escape so they can avoid the beast for a minute or 2. #patientchat |
| Melissa VanHouten @melissarvh RT @power4patients: T3: T3: At PEN, we use our community to educate and share information, research, and stories so patients can advocate for the best care #patientchat |
| R.M.C. Inc @RMCAwareness RT @melissarvh: We share credible resources & information re proper diagnosis & effective treatments. Help each other advocate for better outcomes (individually & as a community) & support each other emotionally (better mental health). #PatientChat |
| Amanda G @LAlupusLady RT @carlyflumer: T3: T3: Patient education is key to improving healthcare outcomes. Sharing stories about different side effects and symptoms help others feel like they’re a part of a larger community. #patientchat |
| R.M.C. Inc @RMCAwareness RT @LAlupusLady: T3 The @healthevoices community of friends and patient leaders has helped me understand how to be a better advocate and caretaker. Stories lead to compassion and awareness. #patientchat |
| R.M.C. Inc @RMCAwareness RT @carlyflumer: T3: T3: Patient education is key to improving healthcare outcomes. Sharing stories about different side effects and symptoms help others feel like they’re a part of a larger community. #patientchat |
| Patient Empowerment Network @power4patients @LAlupusLady @healthevoices That sounds amazing Amanda! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3: My mental health has been the biggest benefactor. This aspect is incredibly important for everyone, including those in the #RareDisease, #ChronicIllness, or #Undiagnosed communities. We aren't alone, we can connect w/others who can relate, support & be supported. #PatientChat |
 | annie Laing @grandma_hockey RT @ncukcharity: |
| Alan Brewington @abrewi3010 A3 community should be about life’s story, not just the negative of healthcare. This makes it richer and better giver of resources so we can continue. #patientchat |
| Amanda G @LAlupusLady RT @abrewi3010: A3 community should be about life’s story, not just the negative of healthcare. This makes it richer and better giver of resources so we can continue. #patientchat |
| R.M.C. Inc @RMCAwareness RT @RareDiseaseDad: @patientchat T3: @patientchat T3: My mental health has been the biggest benefactor. This aspect is incredibly important for everyone, including those in the #RareDisease, #ChronicIllness, or #Undiagnosed communities. We aren't alone, we can connect w/others who can relate, support & be supported. #PatientChat |
| Patient Chat @patientchat T4: What are some of the challenges patients in your community face? #patientchat https://t.co/AHTRpQSvIV |
 | Our Odyssey @_OurOdyssey_ RT @carlyflumer: T2: T2: Facebook, Twitter, and Instagram are places where all types of communities can be found! Shout out to @_OurOdyssey_ representing #chronic and #rare. 🦓#patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What are some of the challenges patients in your community face? #patientchat https://t.co/AHTRpQSvIV |
| R.M.C. Inc @RMCAwareness T4: Access to comprehensive cancer centers, troubles with an initial and/or proper diagnosis and finding doctors who specialize and treating their specific diagnosis. #patientchat |
| John Novack @J2Novack RT @patientchat: T4: T4: What are some of the challenges patients in your community face? #patientchat https://t.co/AHTRpQSvIV |
| Alan Brewington @abrewi3010 A4 as a #chronicpain patients the stigma of being an #opiate user is always present. Stigma is a constant battle that we all hope is minimized some day. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: Simply an understanding of what the disease is if they’ve even heard about the disease in the first place. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A3: Peer support as nobody understands the nuances of mitochondrial #disease better than those. Who. Have. It! I've asked, "How many people have..." "What works best for {symptom]", etc... #PatientChat #Community #RareDiseaseTruth |
 | IFTIKHAR MD ZIA @thisiszia RT @patientchat: Join us for a “Rare but Not Invisible: Join us for a “Rare but Not Invisible: Finding Your Community” Empowered #patientchat on Friday, April 16th at @ 10 AM PT| 1 PM ET with our RMC Network Manager, Cora Connor (@RMCAwareness)! https://t.co/KoZ2dAKJ0r https://t.co/J5cWcJajrg |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4: This could be a #PatientChat topic all on it's own! There are many prominent challenges. Here are a few: accessibility, diagnosis, being heard (by doctors, legislators, friends, family), insurance coverage, co-pays, pre-auth, resources (condition & support/community related). |
| Melissa VanHouten @melissarvh So many! Some search years 4 a proper diagnosis. Encounter docs who aren't familiar w/the condition & don't understand the challenges associated. Specialists few & far between. Few treatments - none wholly safe, effective, & reliable. No cure. Isolation & loneliness. #PatientChat |
| R.M.C. Inc @RMCAwareness T4: Tissue donation drives cancer research https://t.co/bNm00FmPQ3 (@pattern_org) and our RMC patient registry(https://t.co/zbUwoSF1n6) Can serve as ways to overcome various challenges in the RMC community. #patientchat |
| Melissa VanHouten @melissarvh RT @RMCAwareness: T4: T4: Tissue donation drives cancer research https://t.co/bNm00FmPQ3 (@pattern_org) and our RMC patient registry(https://t.co/zbUwoSF1n6) Can serve as ways to overcome various challenges in the RMC community. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @melissarvh Yes! Advocating together and mental health are so important, and much better (at least for me) when approached with community. #PatientChat |
| Amanda G @LAlupusLady A4 Sometimes living with chronic health conditions limits a person’s ability to be consistent in online communication and engagement. #PatientChat reality. |
| Adam Johnson - DadVocate @RareDiseaseDad @carlyflumer Well said (as usual), Carly! #PatientChat |
| Alan Brewington @abrewi3010 A3 a community should be a place to learn & gain energy from. However that means it needs people to give knowledge & energy from. A community is a dynamic organism #patientchat |
| Patient Chat @patientchat T5: How can we help amplify the voices of vulnerable patients in our community? #patientchat https://t.co/dGMp484XVf |
| Adam Johnson - DadVocate @RareDiseaseDad @LAlupusLady Excellent point, Amanda. Thank you for bringing this up! #PatientChat |
| R.M.C. Inc @RMCAwareness T5: We must raise awareness within the medical community and among the advocate community. I am proud to share our Invisible No More Campaign which is raising awareness about RMC for various communities. https://t.co/lq4FTRrmN9 #patientchat |
| Patient Chat @patientchat RT @RMCAwareness: T5: T5: We must raise awareness within the medical community and among the advocate community. I am proud to share our Invisible No More Campaign which is raising awareness about RMC for various communities. https://t.co/lq4FTRrmN9 #patientchat |
| Alan Brewington @abrewi3010 A4 stereotypes about mental health and gender roles are challenges. For example as a chronic male am I allowed to shed tears bc of my #chronicpain. Or should I be a tough guy. #patientchat |
| Melissa VanHouten @melissarvh They want to be taken seriously by friends, family, medical professionals, researchers, & legislators/ policymakers. They feel guilty & inadequate & are often afraid to speak up & advocate for themselves out of fear they won't be believed. #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5: We need to continue to rally around each other. It's powerful to see communities like this #PatientChat recognize the challenges & speak up together. We need systemic change in many instances so we don’t have these continual individual challenges that are addressed in silos. |
| Patient Chat @patientchat @carlyflumer Happy you could join us Carly 😊 #patientchat |
| Marni Cartelli @Purrfectly_Rare A.4 #patientchat I have been welcomed & supported by all of the #RareDisease & #chronicillness community & I consider it all my family I think 1 of the biggest problems is there will always B groups left out of initiatives but we need 2 make sure it's not always same groups |
| Melissa VanHouten @melissarvh RT @RMCAwareness: T5: T5: We must raise awareness within the medical community and among the advocate community. I am proud to share our Invisible No More Campaign which is raising awareness about RMC for various communities. https://t.co/lq4FTRrmN9 #patientchat |
| Amanda G @LAlupusLady A5 A goal of #LupusWithFlair is to “level up” the next generation of lupus warriors, to engage and empower them... shining a spotlight on their stories. MAY 31 days of amplifying voices thanks to @healthevoices Impact Fund grant. #patientchat |
| Patient Chat @patientchat #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How can we help amplify the voices of vulnerable patients in our community? #patientchat https://t.co/dGMp484XVf |
| Amanda G @LAlupusLady RT @abrewi3010: A4 stereotypes about mental health and gender roles are challenges. For example as a chronic male am I allowed to shed tears bc of my #chronicpain. Or should I be a tough guy. #patientchat |
| R.M.C. Inc @RMCAwareness RT @RareDiseaseDad: @patientchat T5: @patientchat T5: We need to continue to rally around each other. It's powerful to see communities like this #PatientChat recognize the challenges & speak up together. We need systemic change in many instances so we don’t have these continual individual challenges that are addressed in silos. |
| Patient Empowerment Network @power4patients RT @RMCAwareness: T5: T5: We must raise awareness within the medical community and among the advocate community. I am proud to share our Invisible No More Campaign which is raising awareness about RMC for various communities. https://t.co/lq4FTRrmN9 #patientchat |
| R.M.C. Inc @RMCAwareness T5: We must also make sure research is funded and speak with lawmakers. Find community and work together! #patientchat |
| Amanda G @LAlupusLady @abrewi3010 sharing takes strength... #patientchat |
| Alan Brewington @abrewi3010 A5 all patients are vulnerable by definition, we need to accept this first. Next ask how might we promote/signal boast each other. Also realize I can help a #narcolepsy patient even though I’m a #chronicpain patient #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5 (cont): Those individual challenges are also not really individual. They impact many, yet are handled (out of necessity) individually. To be clear, I'm glad we can rally with/for each other. It would just be nice to have the right thing be done right now, for all. #PatientChat |
| Amanda G @LAlupusLady RT @abrewi3010: A5 all patients are vulnerable by definition, we need to accept this first. Next ask how might we promote/signal boast each other. Also realize I can help a #narcolepsy patient even though I’m a #chronicpain patient #patientchat |
| Alan Brewington @abrewi3010 @LAlupusLady And trust too! #patientchat |
| Alan Brewington @abrewi3010 RT @LAlupusLady: @abrewi3010 sharing takes strength... #patientchat |
| Melissa VanHouten @melissarvh Advocate on their behalf but also help them feel informed & prepared enough to advocate for themselves. Share their perspectives, their stories & their concerns w/ those who might enact meaningful change. #PatientChat |
| Amanda G @LAlupusLady RT @abrewi3010: @LAlupusLady And trust too! #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 |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A4: The mitochondrial #disease roller coaster. Savoring every moment of symptom stability. Balancing being active, vs. more sedentary. The multiple forms of "tired" that switch around randomly. Yawning like it's my job, brain fog, can't keep my eyes open, etc. #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: Let patients have access to conferences for free! #patientchat |
| Melissa VanHouten @melissarvh Amen to that. #PatientChat |
| Melissa VanHouten @melissarvh RT @LAlupusLady: A5 A goal of #LupusWithFlair is to “level up” the next generation of lupus warriors, to engage and empower them... shining a spotlight on their stories. MAY 31 days of amplifying voices thanks to @healthevoices Impact Fund grant. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @stephp66 @patientchat Thank you for sharing, Stephanie! You're such a source of information, encouragement, & truth in our #Mito & #RareDisease communities. I imagine it was (is) an incredibly difficult journey for you as a parent. I'm thankful for the work you do to help others like me! #PatientChat |
| John Novack @J2Novack RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat |
| Alan Brewington @abrewi3010 CT we have all earned the right to bad days but not a bad life. #patientchat |
| Alan Brewington @abrewi3010 RT @carlyflumer: T5: T5: Let patients have access to conferences for free! #patientchat |
| Marni Cartelli @Purrfectly_Rare A.5 #patientchat 1st start 2 listen 2 them instead of what "leaders" have 2 say about amplifying their voices Y are we talked to about what senior patients experience, instead of hearing from them directly (I know those who would speak about it)? Can't amplify what u don't know |
| R.M.C. Inc @RMCAwareness CT: Always get a second or even a third opinion. You are your biggest advocate #patientchat |
| Patient Chat @patientchat RT @Purrfectly_Rare: A.5 #patientchat 1st start 2 listen 2 them instead of what "leaders" have 2 say about amplifying their voices Y are we talked to about what senior patients experience, instead of hearing from them directly (I know those who would speak about it)? Can't amplify what u don't know |
| Patient Chat @patientchat @Purrfectly_Rare "Can't ampllify what u don't know" well-said! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat CT: Community is essential. From Megan Devine's book "It's OK That You're Not OK": "Everything is welcome in a community of loss. We know we're alone, & we're not alone in that. We hear each other. It doesn't fix anything, but somehow it makes it different." #PatientChat |
| R.M.C. Inc @RMCAwareness RT @patientchat: @Purrfectly_Rare "Can't ampllify what u don't know" well-said! #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Patient Chat @patientchat Huge thank you to our RMC Network Manager Cora (@RMCAwareness) for joining us today and sharing your thoughts! Learn more about our Network Manager program here: https://t.co/WRIVYYhoWY #patientchat |
| Amanda G @LAlupusLady RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Amanda G @LAlupusLady RT @patientchat: @Purrfectly_Rare "Can't ampllify what u don't know" well-said! #patientchat |
| Patient Chat @patientchat Join us for a “What is Patient Advocacy?” Empowered #patientchat on Friday, April 30th at @ 10 AM PT| 1 PM ET! https://t.co/9sEknZKIZv https://t.co/4FRgg3ODoB |
| Amanda G @LAlupusLady @carlyflumer Pay patients to attend and have a travel stipend... #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
| Amanda G @LAlupusLady CT Thank you for this space to share our stories and insights. #patientchat |
| R.M.C. Inc @RMCAwareness Thank you for allowing me the platform to learn and share with others! #patientchat |
 | Nerdy Zebra @nerdymedzebra RT @patientchat: Join us for a “What is Patient Advocacy?” Empowered #patientchat on Friday, April 30th at @ 10 AM PT| 1 PM ET! https://t.co/9sEknZKIZv https://t.co/4FRgg3ODoB |
| R.M.C. Inc @RMCAwareness RT @RareDiseaseDad: @patientchat CT: @patientchat CT: Community is essential. From Megan Devine's book "It's OK That You're Not OK": "Everything is welcome in a community of loss. We know we're alone, & we're not alone in that. We hear each other. It doesn't fix anything, but somehow it makes it different." #PatientChat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz SHARE STRUGGLES as #KNOWLEDGE is power. As I've said multiple times, " You can't fix what isn't understood." Also, you can't replace a flat tire, if you don't know how." This applies to many contexts, #drugdiscovery, #RareDisease #ClinicalTrials, #lobbying, etc... #PatientChat |
| R.M.C. Inc @RMCAwareness RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| R.M.C. Inc @RMCAwareness RT @patientchat: Join us for a “What is Patient Advocacy?” Empowered #patientchat on Friday, April 30th at @ 10 AM PT| 1 PM ET! https://t.co/9sEknZKIZv https://t.co/4FRgg3ODoB |
| R.M.C. Inc @RMCAwareness RT @patientchat: Keep the conversation going between chats with hashtag #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @RMCAwareness @patientchat Thank you for hosting, Cora! Fabulous job! #PatientChat |
| Marni Cartelli @Purrfectly_Rare CT #Patientchat Finding the right community is vital 2 managing a diagnosis of a life altering condition It should B a source of support It is also important 2 recognize that as u move through ur journey & ur needs change, ur community might change...that is normal & healthy |
| Patient Chat @patientchat #patientchat |
#patientchat content from Twitter.