#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 Hi #patientchat! My name is Kara from @power4patients |
| Patient Chat @patientchat Excited to have Health Advocacy Summit @HA_Summit here as today’s #patientchat guest |
 | Alexa Jett 🦋 @ohhiialexa Hi #patientchat friends! Alexa in East Texas here again. Always representing the AYA (adolescent/young adult) and thyroid cancer community ❤️ |
| Patient Chat @patientchat @HA_Summit’s mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. Learn more: https://t.co/DesF2LT66r #patientchat |
 | Patient Empowerment Network @power4patients RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat with @HA_Summit here: You can find the topics we'll cover on today’s Empowered #patientchat with @HA_Summit here: https://t.co/4Zvlio42gf |
 | Carly Flumer (she/her) @carlyflumer Hey there! I’m Carly, an #AYA #thyca patient. 🦋 So glad to see @HA_Summit guest-hosting!! #patientchat |
 | Generation Patient @genpatient Hi #patientchat community! Sneha here (founder of @HA_Summit)! Looking forward to sharing experiences having a childhood diagnosis & still transitioning to adulthood (I’m 22) now. Also looking forward to sharing ab the work we do for young adults w chronic medical disabilities! |
| Patient Empowerment Network @power4patients RT @patientchat: @HA_Summit’s mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. Learn more: https://t.co/DesF2LT66r #patientchat |
| Generation Patient @genpatient RT @carlyflumer: Hey there! I’m Carly, an #AYA #thyca patient. 🦋 So glad to see @HA_Summit guest-hosting!! #patientchat |
| Generation Patient @genpatient RT @patientchat: @HA_Summit’s mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. Learn more: https://t.co/DesF2LT66r #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/5D9FyEMfSH #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Hello tribe! Casey Q here, loud-mouthed activist and journo on #healthpolicy #healthliteracy #datarights #healthjustice beats. Interested to hear what folks have to say about today's topic. #patientchat |
 | Soul Nesting @SoulNesting RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/5D9FyEMfSH #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Entering Adulthood with a Chronic Condition with special guest @HA_Summit |
| Generation Patient @genpatient RT @patientchat: Today's #patientchat topic is Entering Adulthood with a Chronic Condition with special guest @HA_Summit |
 | Patient Worthy @PatientWorthy Hello #patientchat! We are Patient Worthy, an online publication that provides relevant information to rare disease patients, caregivers and advocates. We are excited to chat today! |
| Patient Empowerment Network @power4patients RT @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 I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
 | Lillian Lake - Host of #SoulNestingChat @llake Hello friends! Lillian here tweeting from New England. #caregiver and advocate #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Today's #patientchat topic is Entering Adulthood with a Chronic Condition with special guest @HA_Summit |
| Lillian Lake - Host of #SoulNestingChat @llake RT @HA_Summit: Hi #patientchat community! Sneha here (founder of @HA_Summit)! Looking forward to sharing experiences having a childhood diagnosis & still transitioning to adulthood (I’m 22) now. Also looking forward to sharing ab the work we do for young adults w chronic medical disabilities! |
| Lillian Lake - Host of #SoulNestingChat @llake RT @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 T1: When you were first diagnosed, did you know anyone with your condition? How did you find support? #patientchat https://t.co/JxGuG1vKJB |
| Lillian Lake - Host of #SoulNestingChat @llake RT @PatientWorthy: Hello #patientchat! We are Patient Worthy, an online publication that provides relevant information to rare disease patients, caregivers and advocates. We are excited to chat today! |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: When you were first diagnosed, did you know anyone with your condition? How did you find support? #patientchat https://t.co/JxGuG1vKJB |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T1: T1: When you were first diagnosed, did you know anyone with your condition? How did you find support? #patientchat https://t.co/JxGuG1vKJB |
| Generation Patient @genpatient T1: I was diagnosed at age 6. I didn’t know anyone my age with my diagnosis also bc my parents are immigrants and there is no family history of ulcerative colitis/similar conditions. It was a challenge for us to navigate U.S. systems and social stigmas. #patientchat |
| Patient Worthy @PatientWorthy A1: We find that many patients who reach out to us did not know anybody with the same condition. Some healthcare providers are not even fully aware! Being able to connect to patient advocacy groups, and educational sources, is extremely helpful. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T1 Speaking from my son's perspective as a diabetic at 12 yrs old, the answer is no. Mostly, at that time we were on our own but as his dad is 40 yrs w/diabetes & my mom, and I'm a good expert, so we were okay. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T1: Kind of. I knew OF people who had thyroid cancer, but didn’t really know them that well. I mostly just leaned on my family for support. #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: I didn’t know anyone with my condition, nor did I know what a thyroid was or what it did. I didn’t end up finding support until the end of my treatment well into survivorship. I took my diagnosis as it came. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @DrKashmirM And you as well. Greetings! #PatientChat |
| Generation Patient @genpatient T1 (ctd): I found support with my older sister and close family. Otherwise, we did not disclose my condition to anyone for the fear of how they might perceive me at such a young age. #patientchat |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi all. I’m Adam. I’m young at heart, but have moved past young adult age. 😂 Glad to assist, share, listen to, & advocate with/for with anyone on their #RareDisease journey, though. In so many areas of life right now, I love how young adults are leading the charge!#patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake T1 Speaking for myself, a resounding no and still is a no on all accounts. #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T1: T1: I didn’t know anyone with my condition, nor did I know what a thyroid was or what it did. I didn’t end up finding support until the end of my treatment well into survivorship. I took my diagnosis as it came. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: T1: T1: I was diagnosed at age 6. I didn’t know anyone my age with my diagnosis also bc my parents are immigrants and there is no family history of ulcerative colitis/similar conditions. It was a challenge for us to navigate U.S. systems and social stigmas. #patientchat |
| Patient Empowerment Network @power4patients RT @PatientWorthy: A1: A1: We find that many patients who reach out to us did not know anybody with the same condition. Some healthcare providers are not even fully aware! Being able to connect to patient advocacy groups, and educational sources, is extremely helpful. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @RareDiseaseDad @patientchat Hi Adam! It's great to tweet with you today in #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @HA_Summit: T1 (ctd): T1 (ctd): I found support with my older sister and close family. Otherwise, we did not disclose my condition to anyone for the fear of how they might perceive me at such a young age. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @bayliss_j94 I think you would be especially interested in today's #patientchat topic. |
 | Inspire @InspireIsHealth RT @patientchat: Today's #patientchat topic is Entering Adulthood with a Chronic Condition with special guest @HA_Summit |
| Generation Patient @genpatient RT @carlyflumer: T1: T1: I didn’t know anyone with my condition, nor did I know what a thyroid was or what it did. I didn’t end up finding support until the end of my treatment well into survivorship. I took my diagnosis as it came. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @carlyflumer: T1: T1: I didn’t know anyone with my condition, nor did I know what a thyroid was or what it did. I didn’t end up finding support until the end of my treatment well into survivorship. I took my diagnosis as it came. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @ohhiialexa: T1: T1: Kind of. I knew OF people who had thyroid cancer, but didn’t really know them that well. I mostly just leaned on my family for support. #patientchat |
| Generation Patient @genpatient @ohhiialexa Definitely agree here that I knew "of" people in elementary school. But they were so much older which made the experience more isolating. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @ohhiialexa I'm so glad you had family support. What a difference it makes. #patientchat |
| Inspire @InspireIsHealth Hello to #patientchat, John Novack here from Inspire, in lurking mode today. |
| Alexa Jett 🦋 @ohhiialexa @HA_Summit Even the people I knew of were older than me too, just like in your experience! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @PatientWorthy: A1: A1: We find that many patients who reach out to us did not know anybody with the same condition. Some healthcare providers are not even fully aware! Being able to connect to patient advocacy groups, and educational sources, is extremely helpful. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up… #patientchat |
| Alexa Jett 🦋 @ohhiialexa @llake Very blessed to have them #patientchat |
| Patient Chat @patientchat T2: What do you think are some of the unique challenges for someone who is entering into adulthood with a chronic condition? #patientchat https://t.co/D56iGwgyP8 |
| Lillian Lake - Host of #SoulNestingChat @llake @PatientWorthy I agree soundly on all counts. It's so frustrating to have healthcare providers who not only are aware (I get that's a tall order) but they lack interest. It's very frustrating. However, we, fortunately, are having more resources as a backup. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T2: T2: What do you think are some of the unique challenges for someone who is entering into adulthood with a chronic condition? #patientchat https://t.co/D56iGwgyP8 |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: What do you think are some of the unique challenges for someone who is entering into adulthood with a chronic condition? #patientchat https://t.co/D56iGwgyP8 |
| Generation Patient @genpatient T2: So many challenges - vocational, educational, social, economic challenges. The uncertainty that comes financially, with the changing U.S. healthcare landscape, and systems that were not designed for our transition (esp higher education). #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: I didn’t know anyone w/my condition. I hadn’t even heard of it before. It was daunting & overwhelming. Through online searches, I finally came across some resources & a national support group that I’m incredibly thankful for, & I look forward to more connections. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: T2: T2: What do you think are some of the unique challenges for someone who is entering into adulthood with a chronic condition? #patientchat https://t.co/D56iGwgyP8 |
| Lillian Lake - Host of #SoulNestingChat @llake RT @RareDiseaseDad: @patientchat T1: @patientchat T1: I didn’t know anyone w/my condition. I hadn’t even heard of it before. It was daunting & overwhelming. Through online searches, I finally came across some resources & a national support group that I’m incredibly thankful for, & I look forward to more connections. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: T2: T2: So many challenges - vocational, educational, social, economic challenges. The uncertainty that comes financially, with the changing U.S. healthcare landscape, and systems that were not designed for our transition (esp higher education). #patientchat |
| Alexa Jett 🦋 @ohhiialexa T2: Having peers who don’t understand, the stigma of being “too young”, and one of the worst is people who believe you’re faking it! #patientchat |
 | Melissa VanHouten @melissarvh @teaminspire I am right there with you -- lurking. 😊 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @RareDiseaseDad @patientchat I am recovering this week from a concussion and I found the NIH site to be a very helpful resource. #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: To put it bluntly: Everything. Dating, making friends, going to school, starting a career...everything is impacted, especially for #AYAs. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @HA_Summit We need better educational resources and accommodations! Things are better, but we still have a long way to go. #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T2: To put it bluntly: T2: To put it bluntly: Everything. Dating, making friends, going to school, starting a career...everything is impacted, especially for #AYAs. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @RareDiseaseDad @patientchat Awww, thank you. I'm looking forward to a rainy, restful weekend. How about you? #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa You don’t look sick 🙄🙄 #favoritephrase #patientchat |
| Patient Empowerment Network @power4patients RT @RareDiseaseDad: @patientchat T1: @patientchat T1: I didn’t know anyone w/my condition. I hadn’t even heard of it before. It was daunting & overwhelming. Through online searches, I finally came across some resources & a national support group that I’m incredibly thankful for, & I look forward to more connections. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey General ? for those who've walked this road while transitioning into uni/college - what was your experience of student health centers' usefulness (or not) in helping you manage your condition? #patientchat |
| Generation Patient @genpatient T2: Shameless plug here :) We were recently published by the National Academies of Medicine for our work. Here you can find some of the more specific challenges and our recommendations on behalf of young adult patients. #patientchat https://t.co/LCm7teJy8e |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer YOU’RE JUST TOO YOUNG, CARLY!! Why don’t you *understand* that!! Sigh, people!🙄 #patientchat |
| Patient Worthy @PatientWorthy A2: Some of the challenges associated with entering adulthood with a chronic condition are social, financial, professional/vocational. Patients may also deal with stigma from others, which can be mentally and emotionally straining as well. #patientchat |
| Generation Patient @genpatient @ohhiialexa Absolutely! Accommodations haven't been designed for people with chronic/rare diseases. Especially ones that are cyclical in nature as well. #patientchat |
| Patient Worthy @PatientWorthy @carlyflumer @ohhiialexa That is certainly a frustrating thing to hear. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: T2: T2: Shameless plug here :) We were recently published by the National Academies of Medicine for our work. Here you can find some of the more specific challenges and our recommendations on behalf of young adult patients. #patientchat https://t.co/LCm7teJy8e |
| Patient Empowerment Network @power4patients RT @PatientWorthy: A2: A2: Some of the challenges associated with entering adulthood with a chronic condition are social, financial, professional/vocational. Patients may also deal with stigma from others, which can be mentally and emotionally straining as well. #patientchat |
| Patient Empowerment Network @power4patients RT @HA_Summit: T2: T2: Shameless plug here :) We were recently published by the National Academies of Medicine for our work. Here you can find some of the more specific challenges and our recommendations on behalf of young adult patients. #patientchat https://t.co/LCm7teJy8e |
| Melissa VanHouten @melissarvh We hear this frequently from our younger members. They are frightened they will never find someone who will accept & love them. They have difficulty socializing (due to physical limitations) & are frequently left out of events. #patientchat #Gastroparesis |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat Freedom! It sounds good as an idea, but with it comes responsibility, often without backup. Obstacles, temptations, & new distractions, too. You're swept into a world that isn't aware of "invisible" health issues. #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up… #patientchat |
| Alexa Jett 🦋 @ohhiialexa @HA_Summit I truly believe in “nothing about us without us”, and we need to be able to sit at the discussion table for more reasonable accommodations! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @ohhiialexa: @HA_Summit I truly believe in “nothing about us without us”, and we need to be able to sit at the discussion table for more reasonable accommodations! #patientchat |
| Patient Chat @patientchat T3: How did or do you approach these challenges? Did you find any resources helpful? #patientchat https://t.co/wozGRzSH2h |
| Lillian Lake - Host of #SoulNestingChat @llake RT @ohhiialexa: @HA_Summit I truly believe in “nothing about us without us”, and we need to be able to sit at the discussion table for more reasonable accommodations! #patientchat |
| Generation Patient @genpatient @PatientWorthy Thanks for bringing up the mental and emotional aspects. So much transition happening (not only with changing hospitals, maybe going to college/working) BUT also important to address the social aspects and how that can be emotionally taxing for young adult patients! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @PatientWorthy Yes, awareness for rare diseases can be so limited. I guess that’s part of the reason why they’re considered rare!?! Nonetheless, I was still shocked to see how many of my numerous doctors had never heard of my condition. It can make care coordination challenging. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @carlyflumer: @ohhiialexa You don’t look sick 🙄🙄 #favoritephrase #patientchat |
| Generation Patient @genpatient RT @ohhiialexa: @HA_Summit I truly believe in “nothing about us without us”, and we need to be able to sit at the discussion table for more reasonable accommodations! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @ohhiialexa @HA_Summit #patientchat https://t.co/szM2AarAKA |
| Lillian Lake - Host of #SoulNestingChat @llake RT @melissarvh: We hear this frequently from our younger members. They are frightened they will never find someone who will accept & love them. They have difficulty socializing (due to physical limitations) & are frequently left out of events. #patientchat #Gastroparesis |
| Lillian Lake - Host of #SoulNestingChat @llake RT @carlyflumer: T2: To put it bluntly: T2: To put it bluntly: Everything. Dating, making friends, going to school, starting a career...everything is impacted, especially for #AYAs. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: T3: T3: How did or do you approach these challenges? Did you find any resources helpful? #patientchat https://t.co/wozGRzSH2h |
| Patient Worthy @PatientWorthy @ohhiialexa The "too young" stigma is especially harmful, because it discounts the experiences of those who HAVE actually been handling their chronic conditions and DO need support. Chronic conditions don't care about age. #patientchat |
| Generation Patient @genpatient RT @PatientWorthy: @ohhiialexa The "too young" stigma is especially harmful, because it discounts the experiences of those who HAVE actually been handling their chronic conditions and DO need support. Chronic conditions don't care about age. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @carlyflumer Yes! From a parent's perspective, I have to confess I had no idea. Fortunately, my spouse did. You want support, yet, you don't want anyone to know for fear of rejection. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @PatientWorthy: @ohhiialexa The "too young" stigma is especially harmful, because it discounts the experiences of those who HAVE actually been handling their chronic conditions and DO need support. Chronic conditions don't care about age. #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: Support groups both online and in-person have been very beneficial. @SmithCenterDC, @_OurOdyssey_, @teaminspire, and @ThyCaInc are a few of my faves. Plus tweet chats like these where I can meet other amazing advocates! #patientchat |
| Alexa Jett 🦋 @ohhiialexa T3: I wish I had a beautiful, Lifetime movie answer for you, but I don’t. And I think most AYA’s don’t either. It’s just been facing them as they come and doing the best I can! #patientchat |
| Patient Worthy @PatientWorthy @RareDiseaseDad Yes! We recently did an interview with a family whose doctor had never heard of their son's condition (Krabbe disease). They said they wished that there was just more education in the medical field about rare diseases. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @HA_Summit: T2: T2: So many challenges - vocational, educational, social, economic challenges. The uncertainty that comes financially, with the changing U.S. healthcare landscape, and systems that were not designed for our transition (esp higher education). #patientchat |
 | Diverse Health Hub @DHealthhub RT @patientchat: T1: T1: When you were first diagnosed, did you know anyone with your condition? How did you find support? #patientchat https://t.co/JxGuG1vKJB |
| Diverse Health Hub @DHealthhub RT @RareDiseaseDad: @patientchat T1: @patientchat T1: I didn’t know anyone w/my condition. I hadn’t even heard of it before. It was daunting & overwhelming. Through online searches, I finally came across some resources & a national support group that I’m incredibly thankful for, & I look forward to more connections. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @PatientWorthy Exactly! It isn’t helpful and untrue to begin with. #patientchat |
 | C. Beth Cooper, JD/MBA @cbethcooper Love the way this is phrased! #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T3: T3: Support groups both online and in-person have been very beneficial. @SmithCenterDC, @_OurOdyssey_, @teaminspire, and @ThyCaInc are a few of my faves. Plus tweet chats like these where I can meet other amazing advocates! #patientchat |
 | Alan Brewington @abrewi3010 A3 I decided a long time ago it was my choice on how I wanted to define being a chronic patient. Although I update and change the definition as needed, I choose to live my life to match my definition #patientchat |
| Generation Patient @genpatient T3: After I had the colectomy surgery in high school, I created the @ccyanetwork first to find other people my age because nothing existed. But, I wanted to find more people in my local community, so I formally created @HA_Summit in high college. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: How did or do you approach these challenges? Did you find any resources helpful? #patientchat https://t.co/wozGRzSH2h |
| Alexa Jett 🦋 @ohhiialexa @cbethcooper Thank you! ☺️ #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: T3: T3: After I had the colectomy surgery in high school, I created the @ccyanetwork first to find other people my age because nothing existed. But, I wanted to find more people in my local community, so I formally created @HA_Summit in high college. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @PatientWorthy: @RareDiseaseDad Yes! We recently did an interview with a family whose doctor had never heard of their son's condition (Krabbe disease). They said they wished that there was just more education in the medical field about rare diseases. #patientchat |
| Generation Patient @genpatient T3: I should also say that we @HA_Summit focus on ALL chronic and rare diseases. There are different symptoms and disease experiences, but the social/vocational/educational/etc. challenges are very similar. #patientchat |
| Patient Worthy @PatientWorthy A3: We attempt to provide comprehensive resources to help patients, caregivers, and family members. But we also partner with #raredisease advocacy groups (https://t.co/KpY76rmBK9) to spread awareness and amplify patient voices. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @PatientWorthy: A3: A3: We attempt to provide comprehensive resources to help patients, caregivers, and family members. But we also partner with #raredisease advocacy groups (https://t.co/KpY76rmBK9) to spread awareness and amplify patient voices. #patientchat |
| Patient Worthy @PatientWorthy @HA_Summit @CCYANetwork That's awesome that you saw a need and made it happen! You did a fantastic job! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: T3: T3: I should also say that we @HA_Summit focus on ALL chronic and rare diseases. There are different symptoms and disease experiences, but the social/vocational/educational/etc. challenges are very similar. #patientchat |
| Inspire @InspireIsHealth RT @carlyflumer: T3: T3: Support groups both online and in-person have been very beneficial. @SmithCenterDC, @_OurOdyssey_, @teaminspire, and @ThyCaInc are a few of my faves. Plus tweet chats like these where I can meet other amazing advocates! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @RareDiseaseDad @patientchat Awww, that sounds perfectly wonderful. Things are different, but we can often still pull out some wonderful memories. Enjoy! #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up… #patientchat |
| Patient Empowerment Network @power4patients A3: Here's a helpful guide to "telling people who care" created by our friend and daily source of inspiration @carlyflumer #patientchat https://t.co/M6gN6zUdZe |
| Alan Brewington @abrewi3010 A3 I got incredibly lucky in I meet several patients and leaders of #Medx. This exposed me to fellow chronic patients already comfortable in their own definition on what being a chronic patient meant to them. This was an amazing learning experience for me. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @carlyflumer: T3: T3: Support groups both online and in-person have been very beneficial. @SmithCenterDC, @_OurOdyssey_, @teaminspire, and @ThyCaInc are a few of my faves. Plus tweet chats like these where I can meet other amazing advocates! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @HA_Summit: T3: T3: After I had the colectomy surgery in high school, I created the @ccyanetwork first to find other people my age because nothing existed. But, I wanted to find more people in my local community, so I formally created @HA_Summit in high college. #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A3 I decided a long time ago it was my choice on how I wanted to define being a chronic patient. Although I update and change the definition as needed, I choose to live my life to match my definition #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @carlyflumer @SmithCenterDC @_OurOdyssey_ @teaminspire @ThyCaInc So wonderful, Carly! I’m glad you’ve found these support groups & are helping others discover them as well. You’re very much included in the amazing advocates group you refer to. Keep up the great work! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: A3 I got incredibly lucky in I meet several patients and leaders of #Medx. This exposed me to fellow chronic patients already comfortable in their own definition on what being a chronic patient meant to them. This was an amazing learning experience for me. #patientchat |
| Patient Chat @patientchat T4: What are your top concerns this year for school? If you are in the workplace, what is something that is working well since the pandemic and something that is not? #patientchat https://t.co/9zHhLciFHq |
| Lillian Lake - Host of #SoulNestingChat @llake RT @power4patients: A3: A3: Here's a helpful guide to "telling people who care" created by our friend and daily source of inspiration @carlyflumer #patientchat https://t.co/M6gN6zUdZe |
| Lillian Lake - Host of #SoulNestingChat @llake RT @PatientWorthy: A3: A3: We attempt to provide comprehensive resources to help patients, caregivers, and family members. But we also partner with #raredisease advocacy groups (https://t.co/KpY76rmBK9) to spread awareness and amplify patient voices. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What are your top concerns this year for school? If you are in the workplace, what is something that is working well since the pandemic and something that is not? #patientchat https://t.co/9zHhLciFHq |
| Alan Brewington @abrewi3010 A3 learning and discovering new resources is important. We (as patients) need a chance to live these discoveries. There is failure and adjustments along the way. #patientchat |
| Generation Patient @genpatient T4: Even with virtual school, some of us have to fight to get accommodations transferred to an online format (many professors don’t understand that our conditions don’t magically disappear with online school). Communication is key this year more than ever. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: I was in grad school at @METBU @BU_Tweets when I was diagnosed. The scariest thing for me was telling my professors that I may need extensions. 😕 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa I think you make an important point, Alexa. Though I do enjoy myself a Rom-Com (😂), there’s not a Lifetime movie answer here. Yet everyone can still have hope. Doing the best you can is important, & sharing stories & connecting with others is incredibly valuable! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: T4: T4: What are your top concerns this year for school? If you are in the workplace, what is something that is working well since the pandemic and something that is not? #patientchat https://t.co/9zHhLciFHq |
| Lillian Lake - Host of #SoulNestingChat @llake RT @carlyflumer: T4: T4: I was in grad school at @METBU @BU_Tweets when I was diagnosed. The scariest thing for me was telling my professors that I may need extensions. 😕 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: T4: T4: Even with virtual school, some of us have to fight to get accommodations transferred to an online format (many professors don’t understand that our conditions don’t magically disappear with online school). Communication is key this year more than ever. #patientchat |
| Generation Patient @genpatient T4: In addition, check out our Keep High-Risk Students Safe Campaign: https://t.co/garckSLZpT We worked with the American College Health Association and others to develop recommendations/resources. We are also hosting weekly virtual meetings for high-risk students! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @carlyflumer: T4: T4: I was in grad school at @METBU @BU_Tweets when I was diagnosed. The scariest thing for me was telling my professors that I may need extensions. 😕 #patientchat |
| Patient Empowerment Network @power4patients A4: I'll share a few resources about returning to work after cancer treatment that we hope you'll find useful #patientchat from @JBBC Here's Part 1: https://t.co/Slvj4zbTBt |
| Melissa VanHouten @melissarvh Many of our college-age group members have trouble working medical appointments/procedures around their school schedules & find themselves missing class frequently. Some professors are less than understanding. #patientchat #Gastroparesis |
| Generation Patient @genpatient RT @melissarvh: Many of our college-age group members have trouble working medical appointments/procedures around their school schedules & find themselves missing class frequently. Some professors are less than understanding. #patientchat #Gastroparesis |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad Life is nowhere as clean as Lifetime or Hallmark movies are, but there is still many moments of joy, happiness, and fun to be had! And being messy doesn’t take away from any of our accomplishments, either! 😃 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @carlyflumer @METBU @BU_Tweets That's a very real scare! My son found most just weren't aware - school comes first, no exceptions. A major challenge for 4 yrs. Even for myself, as a full-fledged adult, I found the same reaction. It's humiliating. We can do better as a collective humanity. #patientchat |
| Patient Empowerment Network @power4patients A4: Here's Part 2 of returning to work after #Cancer treatment from @JBBC #patientchat https://t.co/B2ZSWGFsHT |
| Alan Brewington @abrewi3010 A4 working from home hasn’t changed my productivity to my surprise. I thought I would be distracted by working from my kitchen table. #patientchat |
| Patient Empowerment Network @power4patients RT @RareDiseaseDad: @ohhiialexa I think you make an important point, Alexa. Though I do enjoy myself a Rom-Com (😂), there’s not a Lifetime movie answer here. Yet everyone can still have hope. Doing the best you can is important, & sharing stories & connecting with others is incredibly valuable! #patientchat |
| Melissa VanHouten @melissarvh RT @HA_Summit: T4: In addition, check out our Keep High-Risk Students Safe Campaign: T4: In addition, check out our Keep High-Risk Students Safe Campaign: https://t.co/garckSLZpT We worked with the American College Health Association and others to develop recommendations/resources. We are also hosting weekly virtual meetings for high-risk students! #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A3 learning and discovering new resources is important. We (as patients) need a chance to live these discoveries. There is failure and adjustments along the way. #patientchat |
| Patient Chat @patientchat RT @HA_Summit: T4: T4: Even with virtual school, some of us have to fight to get accommodations transferred to an online format (many professors don’t understand that our conditions don’t magically disappear with online school). Communication is key this year more than ever. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: A4 working from home hasn’t changed my productivity to my surprise. I thought I would be distracted by working from my kitchen table. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @power4patients: A4: A4: Here's Part 2 of returning to work after #Cancer treatment from @JBBC #patientchat https://t.co/B2ZSWGFsHT |
| Lillian Lake - Host of #SoulNestingChat @llake @melissarvh Yes. Very true. #patientchat |
| Patient Chat @patientchat Last Topic (T5:) coming up… #patientchat |
| Generation Patient @genpatient @melissarvh This is so tough. Also, having to talk with insurance between classes (sometimes this can take HOURS). #patientchat |
| Carly Flumer (she/her) @carlyflumer But my professors were amazing, and I’ve been honored to be taught by them and the knowledge I’ve gained! @jamierauscher @leighcw @alanebearder @AnneDanehy amongst others! #terrierpride #proudtoBU #patientchat |
 | Marni Cartelli @Purrfectly_Rare RT @patientchat: Today's #patientchat topic is Entering Adulthood with a Chronic Condition with special guest @HA_Summit |
| Alan Brewington @abrewi3010 A4 the negative - I hate my house and want to move. I would love a condo in downtown Boise but I can’t afford one. I guess this is preventing a big move during a pandemic as a high risk patient #patientchat |
| Marni Cartelli @Purrfectly_Rare RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Patient Chat @patientchat T5: How has your relationship changed with your family/friends/significant other changed since diagnosis or throughout your disease journey? #patientchat https://t.co/xYcMFiLGGS |
| Patient Empowerment Network @power4patients A4: I probably should have share this one first😳, but here's some food for thought about some things to consider before sharing your diagnosis with your employer #patientchat https://t.co/dhaRnVDy8q |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How has your relationship changed with your family/friends/significant other changed since diagnosis or throughout your disease journey? #patientchat https://t.co/xYcMFiLGGS |
| Carly Flumer (she/her) @carlyflumer T5: You find out real quick your true friends and family. Advocacy has helped me find a second family. ❤️ #patientchat |
 | I’llHandelit @ILlhandelit We are struggling with this right now. Just this school year, there are about 13 absences for combined hospital stays, doctor appointments, tests and out of state care. It’s taken a huge toll on her academically that she can not recover from. #gastroparesis #dysautonomia #POTS |
| Marni Cartelli @Purrfectly_Rare A.1 #patientchat When I was diagnosed I was working in the medical field & had never even heard of my condition. Honestly, didn't care what it was, only wanted to know how to get rid of it & get back to my life Oh, those early days, how naive I was 😋 |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: T5: T5: How has your relationship changed with your family/friends/significant other changed since diagnosis or throughout your disease journey? #patientchat https://t.co/xYcMFiLGGS |
| Patient Empowerment Network @power4patients @carlyflumer You're most definitely a critical and much loved member of the PEN family😍 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @HA_Summit @PatientWorthy Absolutely! This is a huge reason I started advocating & sharing my story. So much stigma, especially for young adults. Even though I’m 36, my first blog topics might be relatable for all ages. I’d love for people to not have the shame & struggles for these concerns. #patientchat |
| Generation Patient @genpatient T5: As I am now 22 and was diagnosed at 6, I have learned to navigate social situations throughout the yrs :) It used to be so hard to keep friendships, but I have found a great group & have learned to communicate ab my condition much better! Time & patience are key! #patientchat |
| Alexa Jett 🦋 @ohhiialexa T5: Life is a lot different after a diagnosis of any kind. Things have changed with many people, but I think it’s for the best. I know who really cares and who is there for me. I appreciate them all so much ❤️ #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat My son's dx brought us closer tog, especially he & his dad. Friends were more challenging - education had to be done. For me with my dx, it's been very hard. Even close friends don't seem to believe what they can't see. It's a rare condition, so that doesn't help. #patientchat |
| Generation Patient @genpatient RT @RareDiseaseDad: @HA_Summit @PatientWorthy Absolutely! This is a huge reason I started advocating & sharing my story. So much stigma, especially for young adults. Even though I’m 36, my first blog topics might be relatable for all ages. I’d love for people to not have the shame & struggles for these concerns. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @Purrfectly_Rare: A.1 #patientchat When I was diagnosed I was working in the medical field & had never even heard of my condition. Honestly, didn't care what it was, only wanted to know how to get rid of it & get back to my life Oh, those early days, how naive I was 😋 |
| Alan Brewington @abrewi3010 A5 I’m not sure how to answer this. Relationships change over time, maturity, falling in and out of love. Not sure how much of this is related to my disease or just life. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @Purrfectly_Rare I'm so sorry. I can relate. 7 yrs later I still have those days. I'd love to have my "real life" back. #patientchat |
| Patient Empowerment Network @power4patients A5: One of the things we hear most often from patients is how isolating a diagnosis can be, especially now. Here are some tips for staying connect w/ friends & family even when you can't physically be together (I'm looking at you, #COVID19) https://t.co/WE38jtvLJq #patientchat |
| Melissa VanHouten @melissarvh We see a lot of parents struggling to let go of young adults for whom they have cared since childhood. The adjustment of letting their child make his/her own decisions can be tough for both the child and the parent. #patientchat #Gastroparesis |
| Generation Patient @genpatient T5: Speaking of relationships...we have been hosting weekly virtual meetings since March 2020. This month, we are focusing entirely on relationships with a chronic/rare disease! #Patientchat check out the registration link below! https://t.co/5PCUBbddZ7 |
| Patient Worthy @PatientWorthy RT @RareDiseaseDad: @HA_Summit @PatientWorthy Absolutely! This is a huge reason I started advocating & sharing my story. So much stigma, especially for young adults. Even though I’m 36, my first blog topics might be relatable for all ages. I’d love for people to not have the shame & struggles for these concerns. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @ROHHAD_Sarah @patientchat I am so genuinely sad to hear this. Please know you aren't alone in this reaction. I think part of this is because people are uncomfortable with what they don't know. It's not an excuse, but I think it's reality. #patientchat |
| Patient Empowerment Network @power4patients RT @melissarvh: We see a lot of parents struggling to let go of young adults for whom they have cared since childhood. The adjustment of letting their child make his/her own decisions can be tough for both the child and the parent. #patientchat #Gastroparesis |
| Generation Patient @genpatient @melissarvh YES! Transition is sometimes equally difficult for guardians who have often been a huge part of the disease journey. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: T5: T5: How has your relationship changed with your family/friends/significant other changed since diagnosis or throughout your disease journey? #patientchat https://t.co/xYcMFiLGGS |
| Lillian Lake - Host of #SoulNestingChat @llake @ROHHAD_Sarah @patientchat I just read your other comment. Yes, it was very hard to see his friend's reactions. They were scared, that was obvious, but we had to make the gesture to educate. His co-workers seem to be more understanding these days - new friends. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: A4: A4: Here's Part 2 of returning to work after #Cancer treatment from @JBBC #patientchat https://t.co/B2ZSWGFsHT |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @melissarvh: Many of our college-age group members have trouble working medical appointments/procedures around their school schedules & find themselves missing class frequently. Some professors are less than understanding. #patientchat #Gastroparesis |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: A4: A4: I'll share a few resources about returning to work after cancer treatment that we hope you'll find useful #patientchat from @JBBC Here's Part 1: https://t.co/Slvj4zbTBt |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: T4: In addition, check out our Keep High-Risk Students Safe Campaign: T4: In addition, check out our Keep High-Risk Students Safe Campaign: https://t.co/garckSLZpT We worked with the American College Health Association and others to develop recommendations/resources. We are also hosting weekly virtual meetings for high-risk students! #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 |
| 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 RT @power4patients: A5: A5: One of the things we hear most often from patients is how isolating a diagnosis can be, especially now. Here are some tips for staying connect w/ friends & family even when you can't physically be together (I'm looking at you, #COVID19) https://t.co/WE38jtvLJq #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @HA_Summit @melissarvh For us, there's been an added issue. He watched his g-mother pass from diabetes complications, and now his dad. It's not something he can talk about, but I know it scares him to the point of sometimes staying away. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @melissarvh: We see a lot of parents struggling to let go of young adults for whom they have cared since childhood. The adjustment of letting their child make his/her own decisions can be tough for both the child and the parent. #patientchat #Gastroparesis |
| Lillian Lake - Host of #SoulNestingChat @llake 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 |
| Lillian Lake - Host of #SoulNestingChat @llake RT @HA_Summit: T5: T5: Speaking of relationships...we have been hosting weekly virtual meetings since March 2020. This month, we are focusing entirely on relationships with a chronic/rare disease! #Patientchat check out the registration link below! https://t.co/5PCUBbddZ7 |
| Generation Patient @genpatient CT: Pediatric and adult resources/support are important, but it is clear there is a huge gap in resources for adolescent and young adult patients. We must focus more on this age group! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @HA_Summit: CT: CT: Pediatric and adult resources/support are important, but it is clear there is a huge gap in resources for adolescent and young adult patients. We must focus more on this age group! #patientchat |
| Carly Flumer (she/her) @carlyflumer CT: Being an #AYA patient with not only #cancer but a #raredisease as well, has changed my life and is incredibly hard. But I cannot deny the friends, family, love, and opportunities it has brought me. ❤️ #patientchat |
| Alan Brewington @abrewi3010 CT Change happens, it’s life and should not be considered scary. As chronic patients we have to remain flexible in order to accommodate change. We still have a right to a good life if we accept change and keep moving forward #patientchat |
| Alexa Jett 🦋 @ohhiialexa CT: Mister Rogers said “Look for the helpers...” and I’m thankful that @HA_Summit and @power4patients are helping ❤️#patientchat |
 | Possiabilities @possiabilities RT @HA_Summit: Hi #patientchat community! Sneha here (founder of @HA_Summit)! Looking forward to sharing experiences having a childhood diagnosis & still transitioning to adulthood (I’m 22) now. Also looking forward to sharing ab the work we do for young adults w chronic medical disabilities! |
| Generation Patient @genpatient RT @ohhiialexa: CT: CT: Mister Rogers said “Look for the helpers...” and I’m thankful that @HA_Summit and @power4patients are helping ❤️#patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat “It’s OK That You’re Not OK” by @refugeingrief “No matter what the deeper reasons are, the loss of friends you thought would stand by you through thick & thin is an added heartbreak. The injustice of these second losses makes grief itself that much more difficult.” #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @HA_Summit That's a good analysis. I find this as a #youngcarer advocate as well. Maybe we think going from youth to adult is as easy as saying the words? #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Alexa Jett 🦋 @ohhiialexa @HA_Summit @power4patients Can’t wait to see what the future brings all of us! #patientchat |
| Patient Chat @patientchat Thank you to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Patient Chat @patientchat And a big thank you to @HA_Summit for joining #patientchat today and sharing your insights! |
| Melissa VanHouten @melissarvh RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Generation Patient @genpatient Thank you #patientchat community! I hope you can check out our yearlong programs, events, and resources by visiting https://t.co/rYiD5zhjdl or its program https://t.co/YduacFWtng and don’t hesitate to reach out @snehadave98! |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, October 30th. Hope to see you there! https://t.co/FcyP4rlxJu |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: The next Empowered #patientchat will be Friday, October 30th. Hope to see you there! https://t.co/FcyP4rlxJu |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @HA_Summit: Thank you #patientchat community! I hope you can check out our yearlong programs, events, and resources by visiting https://t.co/rYiD5zhjdl or its program https://t.co/YduacFWtng and don’t hesitate to reach out @snehadave98! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: And a big thank you to @HA_Summit for joining #patientchat today and sharing your insights! |
| Patient Empowerment Network @power4patients RT @carlyflumer: CT: CT: Being an #AYA patient with not only #cancer but a #raredisease as well, has changed my life and is incredibly hard. But I cannot deny the friends, family, love, and opportunities it has brought me. ❤️ #patientchat |
| Possiabilities @possiabilities RT @patientchat: @HA_Summit’s mission is to connect and empower young adults with chronic and rare diseases through advocacy events and programs. Learn more: https://t.co/DesF2LT66r #patientchat |
 | Littlest Tumor @LittlestTumor We agree and created the NF Young Adult Leadership Program. We are also expanding programming to better serve young adults. Love all the work you guys are doing. Inspiring @HA_Summit @patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat and let us know if you are interested in being a special guest on #patientchat in 2021 |
 | Sneha Dave @snehadave98 RT @HA_Summit: Thank you #patientchat community! I hope you can check out our yearlong programs, events, and resources by visiting https://t.co/rYiD5zhjdl or its program https://t.co/YduacFWtng and don’t hesitate to reach out @snehadave98! |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Keep the conversation going between chats with hashtag #patientchat and let us know if you are interested in being a special guest on #patientchat in 2021 |
| Adam Johnson - DadVocate @RareDiseaseDad @llake @ROHHAD_Sarah @patientchat I agree, Iillian. And I echo your sentiments to Sarah about being sorry to hear this. So difficult. I posted this in response to the original tweet before I saw your interactions. This book has been helpful for me, so thought I’d share just in case it helps you. #patientchat |
 | IFTIKHAR MD ZIA @thisiszia RT @HA_Summit: T3: T3: After I had the colectomy surgery in high school, I created the @ccyanetwork first to find other people my age because nothing existed. But, I wanted to find more people in my local community, so I formally created @HA_Summit in high college. #patientchat |
#patientchat content from Twitter.