SAA Twitter Chat: Advocacy

By Spondylitis Association of America

Wednesday, July 10, 2019

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 (https://www.spondylitis.org/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.

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

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