SAA Twitter Chat: Advocacy

On June 25, 2019, SAA hosted our second Twitter chat. The chat focused on advocacy, and featured members of SAA’s Volunteer Advocacy Committee: Rose @funchefchick, Mary Ann @MaryAnnPoladian and Charis @BeingCharisBlog, as well as @RichAHoward, who is SAA’s Chief Mission Advancement Officer, and leads our Los Angeles spondylitis support group. We had a wonderful time discussing the topic of advocacy – both personal advocacy and effecting change in the wider community. We’ve recently launched a new advocacy campaign (Advocacy) and we’re excited to share it with our community. The feedback and responses were encouraging and insightful. Below we share the content of our #spondychat with our community. It is organized by question and answers. Enjoy! Note: Please email us at programs@spondylitis.org if you’d like to suggest discussion topics for future Twitter chats! We’d love to hear from you. And don’t forget to follow SAA on Twitter @spondylitis for updates on current news and events.

Q1: Intros! Please take a minute to say hi and introduce yourselves. Remember to use #SpondyChat.

Question 1 - Curated tweets by spondylitis

Q2: To everyone else living with #spondylitis: How do you define advocacy? What does it mean to you? #SpondyChat

Question 2 - Curated tweets by spondylitis

Q3: How do you stay organized when it comes to your healthcare needs? For example, doctors’ visits, medications, keeping track of your medical records, and tracking & reporting symptoms? #SpondyChat

Question 3 - Curated tweets by spondylitis

Q4: Our families mean well but can sometimes be overly anxious re: our health or offer misguided advice. Do you have a family member or friend that advocates on your behalf? If so, how do you work together & how do you set boundaries so that your needs are met? #SpondyChat

Question 4 - Curated tweets by spondylitis

Q5: How do you balance everyday life needs with a #chronicillness? #spoontheory #spoonie #SpondyChat

Question 5 - Curated tweets by spondylitis

Q6: If you’re employed outside the home, how have you been impacted in the workforce since your diagnosis & what steps have you taken to advocate for your health needs at your job? #SpondyChat

Question 6 - Curated tweets by spondylitis

Q7: How do you handle issues that arise with your prescriptions (prices, copays) and insurance company denials? Are you aware of any services that can help offset these challenges? #SpondyChat

Question 7 - Curated tweets by spondylitis

Q8: Have you disagreed with a recommendation your physician has made, and if so, how did you approach the conversation and what was the outcome? #SpondyChat

Question 8 - Curated tweets by spondylitis

Q9: What tools or resources do you find helpful in advocating for your own heath care needs, and to effect change in the wider community? #SpondyChat #healthadvocacy

Question 9 - Curated tweets by spondylitis

Q10: Do you engage with your public officials? If so, how? #SpondyChat #healthadvocacy

Question 10 – Curated tweets by spondylitis

Q11: Which advocacy issues are most important to you, and that you’d like to see addressed? #SpondyChat #healthadvocacy

Question 11 - Curated tweets by spondylitis

Q12-A: @RichAHoward, and all members of our Advocacy Committee: How is SAA currently advocating for the spondylitis community? Q12-B: For all of our #spondylitis warriors, how do you see YOURSELF advocating for change? #SpondyChat #healthadvocacy

Question 12A-12B – Curated tweets by spondylitis

Concluding Remarks

Concluding Remarks - Curated tweets by spondylitis

By: Spondylitis Association of America

Tags:

Awareness

SAA Twitter Chat: Advocacy

Q1: Intros! Please take a minute to say hi and introduce yourselves. Remember to use #SpondyChat.

Q2: To everyone else living with #spondylitis: How do you define advocacy? What does it mean to you? #SpondyChat

Q3: How do you stay organized when it comes to your healthcare needs? For example, doctors’ visits, medications, keeping track of your medical records, and tracking & reporting symptoms? #SpondyChat

Q4: Our families mean well but can sometimes be overly anxious re: our health or offer misguided advice. Do you have a family member or friend that advocates on your behalf? If so, how do you work together & how do you set boundaries so that your needs are met? #SpondyChat

Q5: How do you balance everyday life needs with a #chronicillness? #spoontheory #spoonie #SpondyChat

Q6: If you’re employed outside the home, how have you been impacted in the workforce since your diagnosis & what steps have you taken to advocate for your health needs at your job? #SpondyChat

Q7: How do you handle issues that arise with your prescriptions (prices, copays) and insurance company denials? Are you aware of any services that can help offset these challenges? #SpondyChat

Q8: Have you disagreed with a recommendation your physician has made, and if so, how did you approach the conversation and what was the outcome? #SpondyChat

Q9: What tools or resources do you find helpful in advocating for your own heath care needs, and to effect change in the wider community? #SpondyChat #healthadvocacy

Q10: Do you engage with your public officials? If so, how? #SpondyChat #healthadvocacy

Q11: Which advocacy issues are most important to you, and that you’d like to see addressed? #SpondyChat #healthadvocacy

Q12-A: @RichAHoward, and all members of our Advocacy Committee: How is SAA currently advocating for the spondylitis community? Q12-B: For all of our #spondylitis warriors, how do you see YOURSELF advocating for change? #SpondyChat #healthadvocacy

Concluding Remarks

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