#SpoonieChat Transcript
Healthcare social media transcript of the #SpoonieChat hashtag.
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See #SpoonieChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Dawn M Gibson @DawnMGibson #SpoonieChat, Thanks for another great chat! As always, you've given generously of your insights & experiences. @CreakyJoints & I have so much to take with us to #ACR18. My live tweet starts on Saturday. See you all again soon. LOVE YOU! |
 | Griz @transmogrify_ A5: advocate for patients who get "tossed" to rheumys that rheumys don't want to deal with, like ppl w/ #EDS. Fight… https://t.co/oktwQ9YFOG |
 | Sara Blazar Sharpe @zebrawrites A3. Depends on how the conference is structured, but they can be. I just looked at their website and really appreciate the patient perspectives posters program at #ACR18. #SpoonieChat |
 | 💜 Shilo 💜 @FibroShilo A9: Thanks for the enlightening discussion this evening, @DawnMGibson & #spooniepals. I gotta run now, but I’ll catch up w y’all again soon. Love to my peeps!! 💜🤗 #SpoonieChat #SpoonieFamily 💜 |
| Sara Blazar Sharpe @zebrawrites A4. Yes I follow @CreakyJoints! A lot of their posts are relevant to me because of of OA related to #EhlersDanlosSyndrome #SpoonieChat |
| Sara Blazar Sharpe @zebrawrites I wonder if #EhlersDanlosSyndrome is represented there? It seems to be something that some rheumatologists struggle to understand because of the history of division between #EDS/genetics and #JHS/rheumatology? #SpoonieChat |
 | Alice’s Nightmare, DNP, NP-C @AliWonderHell A1 #SpoonieChat I am Alice...long, nightmare personal story but I have PsA and other autoimmunes and am a NP in #ChronicPain |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A2 #SpoonieChat Not this year. I am still in survival mode only life...and the weather went cold and I have struggled to not cry at work as it is this week. |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A3 #SpoonieChat Maybe...I am torn. As a provider I see merit. As a sufferer I still often feel left out of the conversation entirely. |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A4 #SpoonieChat Not before today, I am now. |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A5 #SpoonieChat Patient voices must become a stronger part of the picture. Knowledge =/= lived experience. |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A6 #SpoonieChat Knowledge =/= lived experience and both are needed. |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A7 #SpoonieChat Absolutely serious question...is there room for a local CRNP with her DNP and lived experience to work with @Creakyjoints and do more? |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A8 #SpoonieChat Never was I so glad for a miserable rash as the day my knee locked up and refused to bend. I am fully diagnosed ONLY because my plaques screamed it out. |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell A9 #SpoonieChat The job thing. I am serious. I cry with my patients because I GET IT. I want to fight harder and make a bigger impact. |
 | Audrey R Sutton @audreyrsutton If there's no cure for a disease, how do you manage it? What do you think are best practices for treatment & pain management? #SpoonieChat |
| Audrey R Sutton @audreyrsutton I have a diagnosis, but it doesn't really feel like one bc it's really just a list of symptoms instead. When is a diagnosis meaningful versus just a list of symptoms? #SpoonieChat |
| Sara Blazar Sharpe @zebrawrites A6. #EhlersDanlosSyndrome EXISTS! #Hypermobility is not always #benign. I wish that #rheumatologists that I saw had tested/recognized my hypermobility and sent me to genetics instead of misdiagnosing me with #Fibro or #mecfs and sending me away. #ACR18 #SpoonieChat |
 | Bonnie👽💎🍓🦋🪐 @BonnieBarnes48 #SpoonieChat Hi everyone, it’s Bonnie. We are finalizing our move to Florida! So exciting, but super busy and can’t chat. Love to all of you😘 |
| Sara Blazar Sharpe @zebrawrites A7. Can you ask about the best way to disperse the 2017 Criteria for #EhlersDanlosSyndrome and #HSD. https://t.co/haj4lvfGyy #SpoonieChat #ACR18 |
| Sara Blazar Sharpe @zebrawrites A8. I was misdiagnosed with #Fibro & #mecfs before correct diagnoses of #hEDS, #POTS, & #MCAS. I have a great rheumatologist now who is also my primary and truly gets it, but I saw many who gave me diagnoses of exclusion w/o proper testing & sent me away #SpoonieChat #ACR18 |
| Sara Blazar Sharpe @zebrawrites A9. In closing, I know I’m repeating myself, but rheumatologists need to learn to recognize and treat #EhlersDanlosSyndrome/ #HypermobilitySpectrumDisorders. They at the very least need to know how & when to look for hypermobility & refer to a geneticist. #SpoonieChat #ACR18 |
#SpoonieChat content from Twitter.