#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 We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited about today’s #patientchat |
 | Alexa Jett 🦋 @ohhiialexa Hello friends of #patientchat! I’m Alexa in East Texas. I am a thyroid cancer survivor and AYA (Adolescent/Young Adult) Cancer advocate. Happy Thyroid Cancer Awareness Month, and to anyone else who is celebrating a awareness month! 🦋💜 |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings, #patientchat - Casey Q aka Mighty Casey here. Regular contributor to @power4patients blog, also mostly-regular participant here. Health/data policy wonk, #epatient, #openscience activist, #bcsm member (dx 2007, ER/PR+ St 2a, NED since 2008) |
 | Simply Kristy @SimplyKristyD @RarePOV Nice to 'meet' you Stephanie. I'm also a #raredisease patient #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 @patientchat @power4patients #patientchat https://t.co/8SQtFW3tJr |
 | 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/YcLUqrICt2 |
 | Diverse Health Hub @DHealthhub @patientchat Hi everyone, I’m Nykema from DHH. Hope you all had a wonderful week and an even better weekend ahead of you! #patientchat |
| Simply Kristy @SimplyKristyD I'm Kristy, EDS & Anklyosing Spondolitis patient, advocate for patients & caregivers to better manage their health. Momma to 3 young kids and married to the (sometimes) love of my life #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ohhiialexa #patientchat https://t.co/uP2SVER0OD |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat |
| Simply Kristy @SimplyKristyD @MightyCasey @patientchat @power4patients Nice gif use! #patientchat :) |
| Alexa Jett 🦋 @ohhiialexa @MightyCasey Hello to my favorite #patientchat comic relief! https://t.co/Zd0yeuO0gU |
| Patient Chat @patientchat Today's #patientchat topic is Asking the Right Questions at the Right Time: Navigating Your Path to Empowerment https://t.co/YcLUqrICt2 |
 | Vera Rulon FAHIMA @vrulon #patientchat Hello everyone! Vera R here from NY. Advocate, thought leader, ready to chat!!! @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 |
 | Alan Brewington @abrewi3010 Alan here. I fell off a cliff rock climbing, have #rheumatoidarthritis #afib #chronicpain #degenerativediskdisease, #PTSD and #depression. I work full time still, #ski, and practice #photography. #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with them? #patientchat https://t.co/Up4QqGN2iZ |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @LaurenCTesta #patientchat https://t.co/lEJPLHl2hz |
| Alexa Jett 🦋 @ohhiialexa T1: I didn’t have any resources outside of my hospital when I was first diagnosed. However, I took advantage of chaplaincy services regularly! The entire staff were very helpful to me. #patientchat |
 | Open Science @_open_science_ RT @MightyCasey: Greetings, #patientchat - Casey Q aka Mighty Casey here. Regular contributor to @power4patients blog, also mostly-regular participant here. Health/data policy wonk, #epatient, #openscience activist, #bcsm member (dx 2007, ER/PR+ St 2a, NED since 2008) |
| Patient Empowerment Network @power4patients @abrewi3010 Hey Alan, where is your favorite place to ski? We're expecting our first frost here in CO early next week so snow is right around the corner! I'm interested to see what skiing will be like in the COVID era. #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: T1: T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with them? #patientchat https://t.co/Up4QqGN2iZ |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with them? #patientchat https://t.co/Up4QqGN2iZ |
| Vera Rulon FAHIMA @vrulon T1: I did a lot of my own research online. One thing I wish I had done more of was research the meds that I was prescribed before agreeing to take them. Too much trial and error, side effects, struggle, to find the right combo! #patientchat |
| Simply Kristy @SimplyKristyD T1: I connected with diagnosis specific support groups which were (are) very helpful as a #raredisease patient. I found them on social media myself. #patientchat |
| Vera Rulon FAHIMA @vrulon @ohhiialexa Unsung heros! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @vrulon Absolutely! Chaplains are amazing people. #patientchat |
| Alan Brewington @abrewi3010 A1 since my rock climbing fall I’ve been playing catch with knowledge and resources. Mostly I ask questions, even so called dumb questions can help identify someone’s character. I found #patientchat & #medx early in my epatient days which made my life easier & funnier |
| Vera Rulon FAHIMA @vrulon @SimplyKristyD Really excellent resource! #patientchat |
| Patient Empowerment Network @power4patients @patientchat We encourage newly diagnosed #cancer patients to start with us to help orient them to the Path to Empowerment Framework but to also engage with disease-specific advocacy groups, many of whom are our partners #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: this is almost can'o'worms/PTSD for me. Breast cancer dx in '07 meant not a lot of peer groups not attached to ACS or breastcancerdotorg forums. That was YMMV, not super helpful at the time. 1/x #patientchat |
 | Viet Le DMSc PA-C FACC FAHA HF-Cert @VietHeartPA RT @patientchat: T1: T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with them? #patientchat https://t.co/Up4QqGN2iZ |
| Simply Kristy @SimplyKristyD @power4patients @abrewi3010 First frost .. in September? #patientchat |
| Simply Kristy @SimplyKristyD @rarelikeher Social media can be an amazing way to connect with other patients :) #patientchat |
 | Christina Lizaso @btrfly12 RT @vrulon: T1: T1: I did a lot of my own research online. One thing I wish I had done more of was research the meds that I was prescribed before agreeing to take them. Too much trial and error, side effects, struggle, to find the right combo! #patientchat |
| Christina Lizaso @btrfly12 RT @SimplyKristyD: T1: T1: I connected with diagnosis specific support groups which were (are) very helpful as a #raredisease patient. I found them on social media myself. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: finding @stales on Twitter (joined April '08 during chemo - 140chars = perfect for chemobrain) was a BIG help. Also I'm a #journo so researching topics is one of my superpowers, along with fact-checking. #patientchat 2/x |
 | Mary Leer @vleer_ny #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
| Patient Empowerment Network @power4patients @SimplyKristyD @abrewi3010 Yep, it's going to be 98F here in Boulder this weekend then a frost on Tuesday. Colorado weather keeps it interesting #patientchat |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @patientchat Found #bcsm when I was googling breast cancer treatments for my mom. Began engaging the group with my caregiver questions. Four months later, when I was diagnosed, I already had connections to a support network. #PatientChat |
 | OpenSci Talk @OpenSciTalk RT @MightyCasey: Greetings, #patientchat - Casey Q aka Mighty Casey here. Regular contributor to @power4patients blog, also mostly-regular participant here. Health/data policy wonk, #epatient, #openscience activist, #bcsm member (dx 2007, ER/PR+ St 2a, NED since 2008) |
| Simply Kristy @SimplyKristyD @power4patients @abrewi3010 Sounds like it! :) #patientchat |
| Alan Brewington @abrewi3010 @power4patients That’s a hard question. Some of the best ski adventures I’ve had are with my friends at our home resort of @BOGUSBASIN. Snowbird Ut is amazing bc of the tram and snow quality. Mt Hood in August was fun #patientchat |
 | Inspire @InspireIsHealth RT @coffeemommy: @patientchat Found #bcsm when I was googling breast cancer treatments for my mom. Began engaging the group with my caregiver questions. Four months later, when I was diagnosed, I already had connections to a support network. #PatientChat |
| Patient Empowerment Network @power4patients RT @coffeemommy: @patientchat Found #bcsm when I was googling breast cancer treatments for my mom. Began engaging the group with my caregiver questions. Four months later, when I was diagnosed, I already had connections to a support network. #PatientChat |
| Patient Chat @patientchat T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https://t.co/52SyA5Z8XO |
| Inspire @InspireIsHealth RT @patientchat: T2: T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https://t.co/52SyA5Z8XO |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: found some local IRL/f2f friends had had breast cancer, their input was also helpful. Accidental meeting in a grocery store (long story, it's in my book) linked me w/surgeon who was *outstanding*, she recc'd right onc for me, and so it goes. #patientchat 3/x |
| Inspire @InspireIsHealth Hello to #patientchat, John Novack from Inspire checking in to listen and learn. |
| Diverse Health Hub @DHealthhub RT @patientchat: T2: T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https://t.co/52SyA5Z8XO |
| Alan Brewington @abrewi3010 @SimplyKristyD @power4patients A couple places got dumped on according to the news. #patientchat |
| Diverse Health Hub @DHealthhub RT @coffeemommy: @patientchat Found #bcsm when I was googling breast cancer treatments for my mom. Began engaging the group with my caregiver questions. Four months later, when I was diagnosed, I already had connections to a support network. #PatientChat |
| Vera Rulon FAHIMA @vrulon @teaminspire Hello John!! Welcome! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @RarePOV It can be so isolating being a young adult with any type of diagnosis. I understand being the “young person”! #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @patientchat Interesting topic! For many, figuring out the right questions to ask is actually the most challenging part. #PatientChat (Stacey, cancer patient/research/policy advocate popping in from Santa Clara, California) |
| Patient Empowerment Network @power4patients @RarePOV We hear this so often in #cancer education and support. Most of the resources available are geared toward an older audience. That's why we love @StupidCancer and other orgs that support younger patients #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: forums were, as I said, YMMV on fleek. Lots of outrage at some of my questions (like: is chemo totally necessary), seemed most folx wanted me to validate their experience by having exact same experience. That's not how this #epatient rolls. 4/4 #patientchat |
| Patient Empowerment Network @power4patients RT @coffeemommy: @patientchat Interesting topic! For many, figuring out the right questions to ask is actually the most challenging part. #PatientChat (Stacey, cancer patient/research/policy advocate popping in from Santa Clara, California) |
| Simply Kristy @SimplyKristyD T2: Genetic testing led to my diagnosis. Took me 7 years to get there but it changed the course of my care. Tremendous impact on my treatment journey and ability to access care. #patientchat |
| Christina Lizaso @btrfly12 Waving hello to #patientchat :) If interested in joining the chat - more info here: https://t.co/uaAWAkl3hC |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https://t.co/52SyA5Z8XO |
| Alan Brewington @abrewi3010 A2 I’ve never been offered genetic testing as far as I remember. In their defense I don’t think I’ve ever asked for it. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @power4patients @RarePOV @StupidCancer I second that on Stupid Cancer! YA folx need peer support from *actual* peers. #patientchat |
| Vera Rulon FAHIMA @vrulon T2: Interesting question. Wasn't offered. #patientchat |
| Patient Empowerment Network @power4patients RT @SimplyKristyD: T2: T2: Genetic testing led to my diagnosis. Took me 7 years to get there but it changed the course of my care. Tremendous impact on my treatment journey and ability to access care. #patientchat |
| Mary Leer @vleer_ny @patientchat Ok, I’m Mary in NYC right now and having some difficulty with tech today. But will hopefully be able to participate #patientchat |
| Patient Chat @patientchat Topic 3a (T3a:) coming up...#patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: ANOTHER HOT BUTTON FOR ME. DX in '07 TX thru '08 = before ACA. My insurance was, in short, crap. I was not offered genomic testing, only one avail at time (IIRC) was OncotypeDX, would have had to self-pay, couldn't afford it. #patientchat |
| Patient Chat @patientchat T3a: What are your tips to get the best, most-personalized treatment for your situation? How can you plan for treatment side effects? #patientchat https://t.co/pNiCAziMgQ |
| Christina Lizaso @btrfly12 Peer groups can be a great place to discover topics and questions you don't know enough to even know to ask about. Finding a peer group that works for you isn't easy and patients often left on own to find. Unfortunately there can be some toxic ones to sort through #patientchat |
| Patient Empowerment Network @power4patients @SimplyKristyD This is exactly why it's so important to INSIST on genetic testing to determine best treatment path for you #patientchat |
| Alexa Jett 🦋 @ohhiialexa @MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic illnesses! @Srotberg15 and @lilannalaurent do amazing work for this population. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3a: T3a: What are your tips to get the best, most-personalized treatment for your situation? How can you plan for treatment side effects? #patientchat https://t.co/pNiCAziMgQ |
| Christina Lizaso @btrfly12 Peer groups also give you confidence to speak up for yourself and ask those questions. #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: @MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic illnesses! @Srotberg15 and @lilannalaurent do amazing work for this population. #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: Peer groups can be a great place to discover topics and questions you don't know enough to even know to ask about. Finding a peer group that works for you isn't easy and patients often left on own to find. Unfortunately there can be some toxic ones to sort through #patientchat |
| Alexa Jett 🦋 @ohhiialexa T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any between appointments, take advantage of your patient portal. #patientchat |
| Simply Kristy @SimplyKristyD @btrfly12 Yes! I ran into this (toxic groups) often in the early stages of my journey to diagnosis #patientchat |
| Christina Lizaso @btrfly12 RT @muntma: |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T3a: T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any between appointments, take advantage of your patient portal. #patientchat |
| Patient Chat @patientchat @vleer_ny Hi Mary, glad you could join! Feel free to jump in wherever :) #patientchat |
| Christina Lizaso @btrfly12 RT @RarePOV: |
| Simply Kristy @SimplyKristyD T3 Ensure you are going into your appointment prepared, list of symptoms, questions, etc. Make the most efficient use of your time with your Dr. I try to keep my day after treatment light, lots of fluids, rest and giving myself permission to slow down. #patientchat |
| Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @patientchat Offered germline genetic testing at dx but had to change oncologists to get somatic genomic testing (5 yrs before it became standard of care). Made huge difference- those results helped me make decision to skip chemotherapy infusions. Wouldn't have happened w/o #bcsm #PatientChat |
| Patient Chat @patientchat Topic 3b (T3b:) coming up...#patientchat |
| Alan Brewington @abrewi3010 A3a tell your doc both the good and bad of your current quality of life. Provide constant updates to your #QOL. Most docs care & want to help, sharing ur story helps develop the care portion of #healthcare #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3a: where #peertopeer can really accelerate info-gathering and decision-tree building. Obvi you want input from clinical team, and with that info you can formulate ?s to ask peer group folx. Which in turn builds ?s for clinical team. Virtuous cycle, #epatient style #patientchat |
| Patient Chat @patientchat T3b: Were you offered and/or did you consider a clinical trial as a treatment option? #patientchat https://t.co/oH5avBixel |
 | Lisa Davis Budzinski @lisadbudzinski RT @btrfly12: Waving hello to #patientchat :) If interested in joining the chat - more info here: https://t.co/uaAWAkl3hC |
| Christina Lizaso @btrfly12 Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you as a person and what is important to you. This helps in getting personalized care. See @abrewi3010 - I've been listening to your #patientchat wisdom :) |
| Diverse Health Hub @DHealthhub RT @patientchat: T3a: T3a: What are your tips to get the best, most-personalized treatment for your situation? How can you plan for treatment side effects? #patientchat https://t.co/pNiCAziMgQ |
 | Adam Johnson - DadVocate @RareDiseaseDad RT @btrfly12: Waving hello to #patientchat :) If interested in joining the chat - more info here: https://t.co/uaAWAkl3hC |
| Christina Lizaso @btrfly12 RT @MightyCasey: A3a: A3a: where #peertopeer can really accelerate info-gathering and decision-tree building. Obvi you want input from clinical team, and with that info you can formulate ?s to ask peer group folx. Which in turn builds ?s for clinical team. Virtuous cycle, #epatient style #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you as a person and what is important to you. This helps in getting personalized care. See @abrewi3010 - I've been listening to your #patientchat wisdom :) |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3b: was not offered trial(s), also didn't ask, so that may be why. Had I been, I would have done one. I'm all about the #science and #clinicalresearch. #patientchat |
| Simply Kristy @SimplyKristyD RT @btrfly12: Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you as a person and what is important to you. This helps in getting personalized care. See @abrewi3010 - I've been listening to your #patientchat wisdom :) |
| Alan Brewington @abrewi3010 A3b I’ve participated in a couple of trials. Another time #rheum was able to get the medicine in trail bc I had no insurance at the time #patientchat |
| Simply Kristy @SimplyKristyD T3 B: I was not offered a clinical trial however I have sought them out & contacted myself when applicable and appropriate. #patientchat |
| Alan Brewington @abrewi3010 Yessss X 100000 |
| Christina Lizaso @btrfly12 Too often patients are the ones who have to bring up clinical trials. In a lot of cases trials help ensure you are getting the most up-to-date care - even in the control group. #patientchat |
| Alan Brewington @abrewi3010 Yesss X 100000 #patientchat |
| Patient Empowerment Network @power4patients @btrfly12 @abrewi3010 YES 100% #patientchat |
 | Mary MACK @MaryOCMack T2: It has to be said that genetic testing should guide treatment. Insurance companies denying that which is indicated clinically and confirmed w/genetic testing. #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you as a person and what is important to you. This helps in getting personalized care. See @abrewi3010 - I've been listening to your #patientchat wisdom :) |
| Patient Empowerment Network @power4patients RT @patientchat: T3b: T3b: Were you offered and/or did you consider a clinical trial as a treatment option? #patientchat https://t.co/oH5avBixel |
| Patient Empowerment Network @power4patients RT @SimplyKristyD: T3 Ensure you are going into your appointment prepared, list of symptoms, questions, etc. Make the most efficient use of your time with your Dr. I try to keep my day after treatment light, lots of fluids, rest and giving myself permission to slow down. #patientchat |
| Vera Rulon FAHIMA @vrulon T3a: Tips for personalized treatments - usually talk it through with my doctor, however too often let her talk me into trying somethings that ends but making me feel worse. No more. #patientchat |
| Christina Lizaso @btrfly12 RT @vrulon: T3a: T3a: Tips for personalized treatments - usually talk it through with my doctor, however too often let her talk me into trying somethings that ends but making me feel worse. No more. #patientchat |
| Diverse Health Hub @DHealthhub RT @abrewi3010: A3a tell your doc both the good and bad of your current quality of life. Provide constant updates to your #QOL. Most docs care & want to help, sharing ur story helps develop the care portion of #healthcare #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: Too often patients are the ones who have to bring up clinical trials. In a lot of cases trials help ensure you are getting the most up-to-date care - even in the control group. #patientchat |
| Diverse Health Hub @DHealthhub RT @ohhiialexa: T3a: T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any between appointments, take advantage of your patient portal. #patientchat |
| Vera Rulon FAHIMA @vrulon T3b: Offered a trial once but was declined and never knew why. There needs to be more #transparency and local clinicians need to be more open to referring patients to trials. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3b: Will observe that #clinicaltrials are now a hot topic in all #peertopeer #cancer communities I know of. Also, in time of COVID, trials that use remote monitoring are growing in number. Check out @_DiMeSociety + @Medidata (hi @stales 🤣) + many more. #patientchat |
| Alan Brewington @abrewi3010 A3b clinical trials are hope but in homework format. Definitely recommend participating in one if given an opportunity #patientchat |
| Christina Lizaso @btrfly12 RT @vrulon: T3b: T3b: Offered a trial once but was declined and never knew why. There needs to be more #transparency and local clinicians need to be more open to referring patients to trials. #patientchat |
| Christina Lizaso @btrfly12 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3b: follow on to that, from NCI at NIH: https://t.co/5G0EAixjYf #patientchat |
| Inspire @InspireIsHealth RT @MightyCasey: A3b: follow on to that, from NCI at NIH: A3b: follow on to that, from NCI at NIH: https://t.co/5G0EAixjYf #patientchat |
| Diverse Health Hub @DHealthhub @ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speaking with your provider. This is YOUR care! #patientchat |
| Patient Chat @patientchat Topic 4 (T4) coming up... #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad Thanks, Christina, for helping me discover #patientchat! T1: Still in shock, I was given a quick, vague printout after being diagnosed w/ mitochondrial myopathy. Took some digging and lots of perseverance, but I stumbled across @MitoAction. So thankful for this amazing support! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @btrfly12: #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @DHealthhub: @ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speaking with your provider. This is YOUR care! #patientchat |
| Patient Empowerment Network @power4patients RT @DHealthhub: @ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speaking with your provider. This is YOUR care! #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseaseDad: Thanks, Christina, for helping me discover #patientchat! T1: Still in shock, I was given a quick, vague printout after being diagnosed w/ mitochondrial myopathy. Took some digging and lots of perseverance, but I stumbled across @MitoAction. So thankful for this amazing support! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @MaryOCMack: T2: T2: It has to be said that genetic testing should guide treatment. Insurance companies denying that which is indicated clinically and confirmed w/genetic testing. #patientchat |
| Simply Kristy @SimplyKristyD @DHealthhub @ohhiialexa It can be so hard to build up the confidence to advocate for yourself. Even now, years after my diagnosis, I can still have trouble with it #patientchat |
| Alexa Jett 🦋 @ohhiialexa @DHealthhub Exactly!!! #patientchat |
| Patient Chat @patientchat T4: What are some of the barriers to access the best treatment for you? What are some ways to overcome access barriers? #patientchat https://t.co/7dMBEea8lN |
| Christina Lizaso @btrfly12 RT @patientchat: T4: T4: What are some of the barriers to access the best treatment for you? What are some ways to overcome access barriers? #patientchat https://t.co/7dMBEea8lN |
| Patient Chat @patientchat @RareDiseaseDad @MitoAction Welcome @RareDiseaseDad! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: Cost. Cost. Cost. Cost. Did I mention cost? Drove too many of my decisions during tx. Still does for too many patients via deductibles/co-pays/co-insurance bushwa. UNIVERSAL COVERAGE, plz. #patientchat |
 | John P Erwin III MD MBA FACC @HeartOTXHeartMD RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/YcLUqrICt2 |
| Alan Brewington @abrewi3010 A4 having no insurance was a big barrier. Many docs offered me great payment plans bc I was willing to work with them. Been offered many free meds docs had at office bc they cared about my QOL. #patientchat |
| Patient Chat @patientchat @vleer_ny Hi Mary, if you use this link: https://t.co/hKoTzayiIy you can following along with the live chat and be sure to include the hashtag #patientchat in all your responses so everyone can see :) |
| Vera Rulon FAHIMA @vrulon T4: Depends on what access you are looking for... #Drugs PBMs are often a barrier to personalized treatments - denying Rx that works for you and having you try multiple different options #clinicaltrials barriers exist in lack of awareness, literacy #patientchat (more to come) |
| Simply Kristy @SimplyKristyD T4: As a #raredisease patient the lack of resources & support are the biggest barriers to care. Often I know more about my conditions then the DR's treating me. Relationship building & finding Dr's who appreciate engaged patients are critical for my treatment #patientchat |
| Alexa Jett 🦋 @ohhiialexa T4: My biggest barrier is my location. I live rurally and have to travel several hours to reach my care team. Plus my internet isn’t the best all the time, so that poses challenges with telehealth and online support. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: In re my cost rant, there are resources locally and nationally via foundations large and small where #cancer patients can apply for assistance w/costs of treatment. Clinical teams often know those, but most of the time you gotta ask. #patientchat |
| Patient Empowerment Network @power4patients RT @MightyCasey: A4: A4: Cost. Cost. Cost. Cost. Did I mention cost? Drove too many of my decisions during tx. Still does for too many patients via deductibles/co-pays/co-insurance bushwa. UNIVERSAL COVERAGE, plz. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What are some of the barriers to access the best treatment for you? What are some ways to overcome access barriers? #patientchat https://t.co/7dMBEea8lN |
| Alan Brewington @abrewi3010 A4 cost, especially in relation to physical therapy. PT maintenance should be standard treatment for all #arthritis based patients but it costs to much #patientchat |
| Patient Empowerment Network @power4patients RT @SimplyKristyD: @DHealthhub @ohhiialexa It can be so hard to build up the confidence to advocate for yourself. Even now, years after my diagnosis, I can still have trouble with it #patientchat |
| Patient Empowerment Network @power4patients RT @MightyCasey: A4: A4: In re my cost rant, there are resources locally and nationally via foundations large and small where #cancer patients can apply for assistance w/costs of treatment. Clinical teams often know those, but most of the time you gotta ask. #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... #patientchat |
| Christina Lizaso @btrfly12 Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to cover my bases. Means too many appointments and too much care coordination. Also barrier of no clear guidelines for mutation w/little research #patientchat |
| Christina Lizaso @btrfly12 RT @MightyCasey: A4: A4: In re my cost rant, there are resources locally and nationally via foundations large and small where #cancer patients can apply for assistance w/costs of treatment. Clinical teams often know those, but most of the time you gotta ask. #patientchat |
| Christina Lizaso @btrfly12 RT @RarePOV: |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @btrfly12: Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to cover my bases. Means too many appointments and too much care coordination. Also barrier of no clear guidelines for mutation w/little research #patientchat |
| Christina Lizaso @btrfly12 RT @SimplyKristyD: T4: T4: As a #raredisease patient the lack of resources & support are the biggest barriers to care. Often I know more about my conditions then the DR's treating me. Relationship building & finding Dr's who appreciate engaged patients are critical for my treatment #patientchat |
| Patient Chat @patientchat T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #patientchat https://t.co/kJYLVEJ7LN |
| Alan Brewington @abrewi3010 A4 lack of resources relating to extreme physical trauma, like falling off a cliff. The physical toll trauma plays on the body is not understood well. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T5: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #patientchat https://t.co/kJYLVEJ7LN |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @vrulon: T4: T4: Depends on what access you are looking for... #Drugs PBMs are often a barrier to personalized treatments - denying Rx that works for you and having you try multiple different options #clinicaltrials barriers exist in lack of awareness, literacy #patientchat (more to come) |
| Diverse Health Hub @DHealthhub RT @patientchat: T5: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #patientchat https://t.co/kJYLVEJ7LN |
 | Barby Ingle Official @BarbyIngle Even set an alarm, and then I got so into something else that I am late... :( Here now... T1: There was not a lot of resources when I got dx, so I started creating my own. It was hard, it was trial and error... a lot of error, there are a lot more resources now. #patientchat |
| Simply Kristy @SimplyKristyD @btrfly12 Many of my specialists are across different health jurisdictions. It can be so hard to keep records and information in order. #patientchat |
| Mary MACK @MaryOCMack T4: USA For- Profit mechanisms huge barrier for most people. Also, medical culture, unlevel playing field I resent. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #patientchat https://t.co/kJYLVEJ7LN |
| Patient Empowerment Network @power4patients RT @btrfly12: Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to cover my bases. Means too many appointments and too much care coordination. Also barrier of no clear guidelines for mutation w/little research #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T5: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #patientchat https://t.co/kJYLVEJ7LN |
| Alexa Jett 🦋 @ohhiialexa T5: I find my support in the AYA community! I am active with @DansHouseofHope, @LacunaLoft, @ElephantsTea, and @MDAndersonNews Cancer 180 program. #patientchat |
| Alan Brewington @abrewi3010 Maybe it’s the chronic part of my life but the number of specialists and their function is a barrier. Hard to keep up and understand what each does. #patientchat |
| Barby Ingle Official @BarbyIngle T2: Not in the beginning 1997 or even 2002 ... not until 2016/2017... and I did the first on my own, and then a specialists ordered it w genetic counseling. #patientchat |
| Alan Brewington @abrewi3010 A5 most of my nutritional knowledge comes from fellow patients. Docs just yell “no more Starbucks” and no Alan “chocolate chip cookies are not life” #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad T2: Insurance denied genetic testing request from my doc who wanted to learn more about my disease(s)/potential causes. I was upset, but asked to be kept in mind for trials. I was able to get in on a sequencing test, which showed VUS. I guess it ended up a win!/win? #patientchat https://t.co/T045MYsU44 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: I kinda rolled my own, based on my time as family care manager (for 'rents) along w/journo skills/tools from decades digging around for stories. Developed a neutropenia food plan that worked. Dr. Driveby (long story, again, in book) didn't GAF. #patientchat |
| Simply Kristy @SimplyKristyD T5: I took a mindfulness intensive that was incredibly helpful for my mental health. I practice journalling & gratitude work daily, daily 5k walks (when I am physically able) and I eat whole, natural foods. With the exception of ice cream! #PatientChat |
| Patient Chat @patientchat Last topic (T6:) coming up... #patientchat |
| Barby Ingle Official @BarbyIngle T3a: To get best TX for your situation. Ask questions, set expectations, keep great record keeping, and know there will be setbacks... that is not defeat, keep going. #patientchat |
 | Our Odyssey @_OurOdyssey_ RT @rarelikeher: T5: |
| Christina Lizaso @btrfly12 RT @BarbyIngle: T3a: T3a: To get best TX for your situation. Ask questions, set expectations, keep great record keeping, and know there will be setbacks... that is not defeat, keep going. #patientchat |
| Patient Chat @patientchat T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we |
| Barby Ingle Official @BarbyIngle T3b: Yes, I have been apart of multiple clinical trials. One of the options is something I still use in my life everyday for help. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @BarbyIngle: T3a: T3a: To get best TX for your situation. Ask questions, set expectations, keep great record keeping, and know there will be setbacks... that is not defeat, keep going. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T6: T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we |
| Christina Lizaso @btrfly12 RT @abrewi3010: A5 most of my nutritional knowledge comes from fellow patients. Docs just yell “no more Starbucks” and no Alan “chocolate chip cookies are not life” #patientchat |
 | Nancy's Point @NancysPoint RT @btrfly12: Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you as a person and what is important to you. This helps in getting personalized care. See @abrewi3010 - I've been listening to your #patientchat wisdom :) |
| Patient Empowerment Network @power4patients RT @RareDiseaseDad: T2: T2: Insurance denied genetic testing request from my doc who wanted to learn more about my disease(s)/potential causes. I was upset, but asked to be kept in mind for trials. I was able to get in on a sequencing test, which showed VUS. I guess it ended up a win!/win? #patientchat https://t.co/T045MYsU44 |
| Christina Lizaso @btrfly12 RT @abrewi3010: Maybe it’s the chronic part of my life but the number of specialists and their function is a barrier. Hard to keep up and understand what each does. #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T5: T5: I find my support in the AYA community! I am active with @DansHouseofHope, @LacunaLoft, @ElephantsTea, and @MDAndersonNews Cancer 180 program. #patientchat |
| Our Odyssey @_OurOdyssey_ RT @RarePOV: |
| Our Odyssey @_OurOdyssey_ RT @ohhiialexa: @MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic illnesses! @Srotberg15 and @lilannalaurent do amazing work for this population. #patientchat |
 | Matthew Katz, MD 🟦 @subatomicdoc RT @abrewi3010: Maybe it’s the chronic part of my life but the number of specialists and their function is a barrier. Hard to keep up and understand what each does. #patientchat |
| Diverse Health Hub @DHealthhub @SimplyKristyD Wow, that sounds great! And we all deserve a little ice cream 🍦 #patientchat |
 | Seth Rotberg @Srotberg15 RT @ohhiialexa: @MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic illnesses! @Srotberg15 and @lilannalaurent do amazing work for this population. #patientchat |
| Diverse Health Hub @DHealthhub RT @BarbyIngle: T3b: T3b: Yes, I have been apart of multiple clinical trials. One of the options is something I still use in my life everyday for help. #patientchat |
| Simply Kristy @SimplyKristyD @DHealthhub Especially on the Friday before a long weekend! :) #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: T6: T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we |
| Alexa Jett 🦋 @ohhiialexa T6: Take each day at a time and try not to live too much in the future. Even though it is so difficult. “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” -Corrie Ten Boom #patientchat |
 | BreastCancer Chat WW #BCCWW @bccww @patientchat T2: Not at time of diagnosis but BRCA testing some years after. As it happens my result was VUS. Grateful I didn’t actually know this at diagnosis as it may well have caused unnecessary anguish but it was worth it at the point it happened. #patientchat |
 | Kits to Heart @kitstoheart @patientchat Giving back and helping others affected by cancer :) #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A6: My No 1 superpower is finding the funny in ... any and everything. Close second is being able to focus rage into humor =) #patientchat https://t.co/HTtPkb7lxT |
| Simply Kristy @SimplyKristyD @ohhiialexa I really love that quote. A great reminder whenever I start to feel a bit overwhelmed #patientchat |
| Barby Ingle Official @BarbyIngle T4: Some of my barriers continue 2b step therapy, prior auth delay, not being believed n acute situations because ER pros dont know about rare diseases? I have asked after those situations r over that some of those pros receive add'l training, incase I have 2 go back #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T6: T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we |
| Simply Kristy @SimplyKristyD T6 1/2: I try to use my experience to help others. I intentionally surround myself with positive people. I try to choose joy daily. I give myself grace on bad days. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @SimplyKristyD It’s one of my favorites! #patientchat |
| Alan Brewington @abrewi3010 A6 living my best life has very little to do with my treatment and beyond. They are tools I have. My living my best life comes from the same reasoning as I play in mountains, It’s bc life is there. The rest is just part of the story I create #patientchat |
| Simply Kristy @SimplyKristyD T6 2/2: I have given myself permission to mourn the loss of "normal" and choose to be excited about what is come, bumps and bruises included. #patientchat |
| Vera Rulon FAHIMA @vrulon Sorry folks. Need to drop off. :( #patientchat great chat!! |
| Kits to Heart @kitstoheart @patientchat I found @SmithCenterDC and @ulmanfoundation to be fantastic resources! #patientchat |
| Matthew Katz, MD 🟦 @subatomicdoc RT @patientchat: T6: T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Hey @ACEPNow - maybe it IS a zebra sometimes =) #patientchat |
| Patient Chat @patientchat @vrulon Thanks for joining - have a great weekend Vera! #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 |
| Barby Ingle Official @BarbyIngle T5: I think I have the BEST PCP in the world because he has helped me in all the ways he knows & when I come to him w a 'lets try this', he talks it through w me & we make a plan. Full support w social/mental/physical/nutrition from him since day 1. #patientchat |
| Simply Kristy @SimplyKristyD @vrulon Great chatting with you! #patientchat |
| Mary MACK @MaryOCMack T6: I try to help other people that have the same rare disease that I do. Advocating for and educating. Nothing like showing people that they can get the gist of an academic paper. #patientchat |
| Patient Empowerment Network @power4patients 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 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @SimplyKristyD Key to remember "normal" is a dryer setting ... #patientchat |
| Christina Lizaso @btrfly12 RT @MaryOCMack: T6: T6: I try to help other people that have the same rare disease that I do. Advocating for and educating. Nothing like showing people that they can get the gist of an academic paper. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5: Took a while but eventually I: -sought help (counselor) -accessed support calls -made an account on The Twitter -began reaching out/getting support via social (thank you all...you may not know it, but I learn from & appreciate you!) -began to own my story #patientchat |
| Barby Ingle Official @BarbyIngle T6: I live my best life by never giving up on HOPE. Humanity is equipt with hope. I was born with an abundance of HOPE, and have nurtured hope my whole life. Hope drives me. #CheerleaderofHOPE #patientchat |
| Barby Ingle Official @BarbyIngle RT @MightyCasey: Hey @ACEPNow - maybe it IS a zebra sometimes =) #patientchat |
| Patient Empowerment Network @power4patients @kitstoheart @patientchat Thanks so much for joining us today @kitstoheart! We're so honored by the opportunity to include our Activity Guide in your upcoming kits! #patientchat |
| Alan Brewington @abrewi3010 CT stealing what @MightyCasey just tweeted, normal is a drier setting. There is no normal life. #patientchat |
 | Elephants and Tea @ElephantsTea RT @ohhiialexa: T5: T5: I find my support in the AYA community! I am active with @DansHouseofHope, @LacunaLoft, @ElephantsTea, and @MDAndersonNews Cancer 180 program. #patientchat |
 | Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph I even put #patientchat in my calendar and I'm still late! Hi all, I hope you are well. |
| Christina Lizaso @btrfly12 RT @RareDiseaseDad: @patientchat T5: @patientchat T5: Took a while but eventually I: -sought help (counselor) -accessed support calls -made an account on The Twitter -began reaching out/getting support via social (thank you all...you may not know it, but I learn from & appreciate you!) -began to own my story #patientchat |
| Alexa Jett 🦋 @ohhiialexa CT: Life is a balancing act, we just have more things to balance. And it’s important to make sure we take care of our needs. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @SimplyKristyD @btrfly12 So true! I haven’t experienced the toxic variety just yet, and it pains me to hear this. But I did find my own. It was a struggle, but I did it and continue to search! #patientchat |
| Simply Kristy @SimplyKristyD CT: Reminded about the importance of advocating for yourself, finding a support system, asking questions and keeping yourself informed. #PatientChat |
| Christina Lizaso @btrfly12 RT @SimplyKristyD: CT: CT: Reminded about the importance of advocating for yourself, finding a support system, asking questions and keeping yourself informed. #PatientChat |
| Kits to Heart @kitstoheart @power4patients @patientchat Managed to drop in just in time :) We look forward to sharing the guides with our recipients! They are truly so well thought-out and useful! #patientchat 💕 |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Christina Lizaso @btrfly12 Have a wonderful weekend all on #patientchat Thanks for all you do to advocate for yourself and others! |
 | IFTIKHAR MD ZIA @thisiszia RT @SimplyKristyD: T2: T2: Genetic testing led to my diagnosis. Took me 7 years to get there but it changed the course of my care. Tremendous impact on my treatment journey and ability to access care. #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: Have a wonderful weekend all on #patientchat Thanks for all you do to advocate for yourself and others! |
 | Sakinah Kaiser (She/Her) @themuslimhippie RT @btrfly12: Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to cover my bases. Means too many appointments and too much care coordination. Also barrier of no clear guidelines for mutation w/little research #patientchat |
| Simply Kristy @SimplyKristyD @rarelikeher You too! Great chatting with you #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Christina Lizaso @btrfly12 #patientchat |
| Diverse Health Hub @DHealthhub RT @ohhiialexa: CT: CT: Life is a balancing act, we just have more things to balance. And it’s important to make sure we take care of our needs. #patientchat |
| Patient Chat @patientchat Schedule Alert: We are back on our normal schedule with chats bi-weekly on Friday’s at 1pm ET | 10am PT #patientchat |
| Simply Kristy @SimplyKristyD @btrfly12 Have a great weekend, Christina! #patientchat |
| Matthew Katz, MD 🟦 @subatomicdoc RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph RT @DHealthhub: @ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speaking with your provider. This is YOUR care! #patientchat |
| Simply Kristy @SimplyKristyD @patientchat Thanks for hosting! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @RarePOV The insurance fights can be utterly exhausting in and of themselves. Add that to the challenges already being faced, and it’s just brutal sometimes. I love your persistence and perseverance, though! #patientchat |
| Patient Chat @patientchat Join us on September 18th for the next Virtual Empowered #patientchat “How to Apply Your Empowerment Skills to Your Health Journey”. Register here: https://t.co/LyrsfN3Zwk https://t.co/BNy8AnYBPJ |
| Patient Empowerment Network @power4patients RT @RareDiseaseDad: @patientchat T5: @patientchat T5: Took a while but eventually I: -sought help (counselor) -accessed support calls -made an account on The Twitter -began reaching out/getting support via social (thank you all...you may not know it, but I learn from & appreciate you!) -began to own my story #patientchat |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @btrfly12 It can be very disheartening and discouraging, especially if you're just starting on your journey. Luckily, I'm finding less toxicity in the groups I participate in now #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: Join us on September 18th for the next Virtual Empowered #patientchat “How to Apply Your Empowerment Skills to Your Health Journey”. Register here: https://t.co/LyrsfN3Zwk https://t.co/BNy8AnYBPJ |
| Inspire @InspireIsHealth RT @patientchat: Join us on September 18th for the next Virtual Empowered #patientchat “How to Apply Your Empowerment Skills to Your Health Journey”. Register here: https://t.co/LyrsfN3Zwk https://t.co/BNy8AnYBPJ |
 | Brandon Hudgins @bhudgruns RT @btrfly12: Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to cover my bases. Means too many appointments and too much care coordination. Also barrier of no clear guidelines for mutation w/little research #patientchat |
| Brandon Hudgins @bhudgruns RT @patientchat: T1: T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with them? #patientchat https://t.co/Up4QqGN2iZ |
| Adam Johnson - DadVocate @RareDiseaseDad @BarbyIngle These barriers are all too real, right? I had an out of state test, called to make sure pre-auth was ok, still got $5k bill. Turns out it was a coding error. If we didn’t push back/dig deeper, I would’ve been stuck w/the bill. How many others have been in same boat? #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad RT @ohhiialexa: T3a: T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any between appointments, take advantage of your patient portal. #patientchat |
 | Candace @RareCandace RT @RarePOV: |
| Barby Ingle Official @BarbyIngle @RareDiseaseDad Exactly. In the beginning I spent thousands that I didnt owe, figuring that out I tried to get the $ back, just doesnt happen. Now I wait & check bills 2 EOB before paying 2 make sure no mistakes. A little harder w the 'transparency' rules & prepay now in AZ. #patientchat |
 | Deb @debg_deb Yes! Very true for myself also! |
| Adam Johnson - DadVocate @RareDiseaseDad @BettinaRyll @power4patients So challenging when my docs know what test I need, but a third party intermediary who has never seen or evaluated my symptoms before decides if it’s approved or not. And I say this knowing how privileged I am to have had quality coverage. What about others? Sigh. #patientchat |
#patientchat content from Twitter.