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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Sunday Jun 28, 2020
Sunday Jun 28, 2020
Welcome to AiArthritis Voices 360 - the talk show hosted by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), whose mission is to help others, like us, living with AiArthritis diseases, have a voice "at the table" alongside other stakeholders as equals, to solve problems that impact education, advocacy, and research.
This week Tiffany, Deb, and Patrice are learning while having a great time as they have been "at EULAR 2020", which was supposed to take place in Germany June 3-6, but is now ONLINE - through September 1st. In this debrief, which is the third of four, cover the following:
- Award-winning abstracts - focus on working with rheumatic diseases, gut health. We talk in detail about our opinions as patients and focus on some specific projects at AiArthritis related to this topic.
- Patient issues with adherences to treatments: fears, side effects, pregnancy, age - interesting research! We delve more into pregnancy and age in particular - especially regarding current research that moms can be on biologics during pregnancy and the difference in those with long term disease and early on refusing to start treatments.
- Cardiovascular: It's not just RA, research for PsA, Axial Spondyloarthritis and others. These diseases ARE full body! Make sure you remember to take care of the whole body.
- EULAR 2020 Recommendations: New RA and PsA treatment guidelines, involving young people in voicing personal therapeutic outcomes interest (i.e. school, work, relationships, socializing), personalized vs precision medicine, shared-decision making, and patient concerns to address for injection therapy (steroid shots, etc).
The team will take all the information they are learning this month and open the conversation up to YOU in July. Want to "go with us" to EULAR in July? Sign up to learn more HERE.
About Us. To learn more about our nonprofit, please visit www.aiarthritis.org.
Donate. Want to give us a High Five, or two? Your support is vital to helping us continue our work to improve the lives of people living with AiArthritis diseases. Your generosity is appreciated! GIVE TODAY
Related Talk Show episodes:
- Synovial Tissue project: Episode 9
- Precision Medicine vs Personalized Medicine: Mini-Episode 9
- Special Series - COVID-19 & AiArthritis: https://www.aiarthritis.org/covid19
- Episode on pregnancy & research with Mariah Leach from Mama's Facing Forward & Linette Dyer from Mother to Baby: Episode 11
- Shared Decision Making and Precision Medicine: Mini-Episode 15
Related Projects:
- Our Accumulator/Working with lack of biologics project: https://www.aiarthritis.org/accumulator
- Our Preparing Patients for Precision Medicine education and research project GET INVOLVED: https://www.aiarthritis.org/precision...
Want to watch the raw footage of our team recording this episode? Visit: https://youtu.be/ypw5kAW3AyU While there you can view the first two debriefs and learn more how YOU can attend conferences "with us".
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Wednesday Jun 24, 2020
Wednesday Jun 24, 2020
Welcome to AiArthritis Voices 360 At The Table. For our final Wednesday minisode, we have important news to share as we re-structure our podcast to expand our platform to appeal to all potential patients...and so, in turn, more voices can be "at the table". Tune in to learn more about this exciting transformation!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Sunday Jun 21, 2020
Sunday Jun 21, 2020
In this episode, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) reflects on her choices about motherhood. While she never felt the "mother bug" to have children of her own, failed relationships led her on the path to dedicate her life to her career - and ultimately she "birthed" this organization.
Like a parent, she has given her heart and soul into its' development over these 9 years and is proud of the accomplishments she and the other patient leaders have achieved. But she also knows her work as a parent is not over, as there is still a lot of work to do to make sure it succeeds and continues to change lives well after she is gone. Like all children, they need financial support to thrive, to grow, to continue to develop, so she is calling on the public to help make that happen with a donation.
Tiffany ends the episode by thanking her own dad for genetically passing down his business savvy and for being a great example of what it takes to be a parent.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Wednesday Jun 17, 2020
Wednesday Jun 17, 2020
This mini-episode originally aired in our AUTO Ball LIVE event (May 16 - 20th on Facebook), but the topic is so important we turned it into a fully produced episode!
Tiffany discusses the importance of raising awareness that the AUTO diseases - autoimmune and autoinflammatory diseases - that include arthritis as a major clinical component are not the same as other types of arthritis. Specific examples include osteoarthritis (due to aging, wear and tear, injury, or excessive pressure on the join), and gout. Failure to differentiate these types of arthritis leads to public confusion, and as a result family and peers may misunderstand the complexity of our challenges. Furthermore, failure to learn arthritis types can lead to delayed detection, diagnosis, and treatment which can cause unnecessary disability, poor quality of life, and inflated healthcare costs.
AiArthritis has launched an AUTO + Arthritis awareness campaign that cleverly uses full body AUTOmobiles to explain our full body diseases. Doing this can differentiate them from the other forms of arthritis! as she teaches you how to creatively compare different arthritis types through Auto-themed activities. Get involved today by creating your own Auto-themed posts so together we can teach the world the differences between our diseases and others that include arthritis! #LearnArthritis
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Sunday Jun 14, 2020
Sunday Jun 14, 2020
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts.
Differentiating Arthritis Types will help all people, with all types of arthritis, gain more understanding - and possible respect - for their condition, will increase detection and referrals, can lead to improved Quality of Life (QOL) and lower healthcare costs long term. The need to differentiate arthritis types, including the focus on a couple dozen autoimmune diseases and autoinflammatory diseases that include arthritis as a major clinical component.
Over 100 autoimmune or autoinflammatory diseases, not all include arthritis. The arthritis is different from other types (like OA or gout). It also can vary in aggressiveness and degree of disease burden. For all, the arthritis differentiates these diseases from the other 100+ and that is why we need to bring light to it.
It’s also equally important to teach both the public and practitioners about the differences so they do not dismiss it (i.e. you’re too young to have osteo, OR if you are older that “it’s not OA so it’s nothing) - lending to delays seeking medical attention.
In this episode, we expand the conversation from patient-reported issues about the need to differentiate arthritis types to including the rheumatologist point of view. What can patients and rheumatologists do to help educate primary care physicians - and other rheumatologists - to consider the AUTO disease features + arthritis to increase detection, referrals, and diagnosis? How can organizations and patient-focused companies get involved?
This episode builds on prior conversations (The Need to Differentiate Arthritis, Typical vs Atypical, and Diagnosis STAT!) and will expand to include more stakeholder voices as we continue the discussion in future episodes - including Rheumy RoundsⓇ and with other nonprofits from around the world. The end goal is to develop materials to educate the public and practitioners about the AUTO + Arthritis diseases and, in turn, increase awareness, expedite detection and diagnosis, and lower healthcare costs associated with delays.
*Rheumy RoundsⓇ is a pilot episode developed by our organization that unites patients and rheumatology professionals at the table - as equals - to discuss issues that, if solved, would improve communication and outcomes.
Who is “at the table”?
Dr. Alfred Kim, rheumatologist and Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine, and founder and director of the Washington University Lupus Clinic.
Suz Schrandt is a patient diagnosed decades ago with Juvenile (Rheumatoid, now called Idiopathic) Arthritis and patient engagement advocate with a health and disability law background. She recently launched a new patient engagement initiative called ExPPect and is currently serving as the Senior Patient Engagement Advisor to the Society to Improve Diagnosis in Medicine. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for PCORI.
Tiffany is the CEO at International Foundation for AiArthritis and person living with non-radiographic Axial Spondyloarthritis and other AiArthritis conditions. She uses her professional expertise in mind-mapping, problem solving, and teaching to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Wednesday Jun 10, 2020
Wednesday Jun 10, 2020
In this week's mini-sode, Tiffany talks about the importance of being counted in research, especially in times when a new disease emerges and only a select few are truly being studied. This is the case with COVID-19, as most research emerging is based on studying people with confirmed positive results. However, due to lack of testing, false negatives (and positives), and other challenges associated with a disease in its' infancy, it's more important now than ever to ensure ALL people, perspectives, and experiences are counted.
Our community is asking many questions about how COVID-19 affected our diseases. The only way researchers can gain enough data to fully answer these questions is if all our experiences are counted. So today we are asking you, if you are diagnosed with an AiArthritis disease and believe you were impacted by COVID-19 (whether you tested positive, or not), please participate in these rheumatology registries:
- COVID-19 Global Rheumatology Alliance. In addition to participating as a supporting organization, our leadership is also involved in the behind-the-scenes research committees as patient liaisons and patient surveys. International. Participate now.
- The Arthritis & Rheumatic Disease COVID-19 Project. This patient-powered study of the Autoimmune Research Collaborative will collect longitudinal data about autoimmune patient experiences with COVID-19 in the USA and Canada only. Sign up now.
- FORWARD: National Data Bank. Participating will provide valuable information to health care providers going forward to help make decisions about how to treat patients with rheumatic diseases who get COVID-19. Participate now.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Your donations are necessary to help us afford to continue the production of this show. Please give today!
Sunday Jun 07, 2020
Sunday Jun 07, 2020
Join Tiffany and Deb, fellow patient co-hosts, for the AiArthritis Voices 360 Talk Show as they welcome Dr. Lisa Zickuhr, rheumatologist from Washington University School of Medicine, to discuss the barriers and benefits of e-health/telehealth as we navigate the new world of COVID-19. How are online visits impacting YOUR care with your rheumy? What is working? What isn't? What do we need to improve?
During this discussion, Dr. Zickuhr explains current efforts to streamline e-health visits as we move forward - which patients will be seen in person? Which will use tele-health or video calls? Deb and Tiffany weigh in with their experiences and opinions and they all discuss the need to include patients in the discussions as new protocols emerge. After you listen to the episode send us an email and tell us your opinions and experiences at podcast@aiarthritis.org.
This episode is in conjunction with our organizations' work to improve access to care and doctor-patient communications. It was also an episode that originally aired LIVE during our annual gala, the AUTO Ball, which was hosted on our Facebook page between May 16 - 20th, 2020. You can watch the raw, unedited footage of this episode on Facebook.
Dr. Zickuhr is a rheumatologist and clinician educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in training. Her clinical interests lie in treating patients with systemic lupus erythematosus and other related conditions. She also cares for patients using telemedicine and is interested in the best ways to teach health care professionals how to communicate with and examine patients virtually.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Wednesday Jun 03, 2020
Wednesday Jun 03, 2020
The European League Against Rheumatism (EULAR) 2020 Scientific Congress, which was supposed to take place in Frankfurt, Germany June 3 - 6 is now being held ONLINE starting June 3 and accessible to patients FOR FREE* through September 1st! Attend with AiArthritis and we will help you navigate the meeting, but also you can join us for post-session conversations, be part of the meetings with other attendees and more! Find us LIVE on YouTube, June 3 at 4pm EST/1pm PST here:
Register at https://congress.eular.org/ and sign up to attend with us at https://bit.ly/AiArthritisEULAR20
*Patients with rheumatic diseases can attend for FREE with a doctors note proving diagnosis. All sessions will be available to view through September 1 so there's plenty of time to get set up. In the meantime, you can tune in to learn from what we are learning, regardless of registration. Just sign up at https://bit.ly/AiArthritisEULAR20 to join us on this journey!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Sunday May 31, 2020
Sunday May 31, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Deb Majcher Constien, AiArthritis volunteer and patient advocate, as they discuss the importance of AiArthritis leaders attending conferences. At EULAR (European League Against Rheumatism) Congress in 2019, Tiffany and Deb attended a session on the existing efforts to advance e-health so we could reach more rheumatic patients and, in turn, improve their health.
They are joined by Aurelie Najm, rheumatology researcher with EULAR and OMERACT (Outcome Measures in Rheumatology). Aurelie was a panelist at the EULAR e-health session and previously made another guest appearance on AiArthritis Voices 360 to discuss obtaining patient consent for participation in clinical research. Check out Episode 9 “Changing The World With Your Knee” for more information on Aurelie’s clinical research and how you can get involved in that project.
In this episode, Tiffany, Deb, and Aurelie will discuss the ongoing efforts of EULAR and AiArthritis to involve the patient voice in the development of new e-health apps and the variety of ways these apps could be utilized by both patients and clinicians to improve treatment outcomes. Aurelie will also explain the value of e-health apps in light of the COVID-19 pandemic. Stay tuned to the end of the episode for information on how you can help researchers develop the next generation of e-health apps to benefit the AiArthritis community.
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 29 ”Conferences and E-Health”
00:52 - Tiffany welcome listeners and co-host, Deb Constein
3:30 - AiArthritis is transitioning away from the old IFAA acronym to make it more clear what the mission of the organization is to outsiders as we move into more spaces in the medical community
4:44 - Today’s episode is about attending conferences like ACR (American College of Rheumatology) or EULAR (European League Against Rheumatism)
5:27 - Deb was diagnosed with RA 37 years ago and is a registered dietitian so research and conferences are a passion for her
5:50 - Deb explains what she and Tiffany do at conferences
7:44 - Deb gives an overview of some of the things she has learned from conferences like a session on e-health
12:42 - Tiffany and Deb are joined by Aurelie to discuss her panel presentation from EULAR on e-health
13:18 - Aurelie says that researchers realized there were a plethora of health apps, but none of them provided adequate information on how they could actually help patients or clinicians
14:13 - Researchers discovered that rheumatology lacked the quantity and quality of health apps compared to cardiology or endocrinology and that patient voices were not included in the development process for e-health apps
15:28 - Half of panel respondents who had used e-health apps reported that they were not very useful
16:00 - EULAR issued recommendations on how e-health apps should be developed to include patients in the development process and to secure patient data
18:42 - Aurelie discusses the stark differences between how researchers were envisioning using e-health apps before COVID-19 and how they are trying to use them now
22:43 - Aurelie explains some of the recommendations from EULAR for developing e-health apps
25:25 - Aurelie breaks down the two main barriers to developing and implementing useful e-health apps
29:43 - Deb shares responses she received from listeners about which e-health apps they use and like
30:29 - Arthritis Power is one app that many respondents enjoyed using
31:25 - Catch My Pain is another app used for tracking symptoms that was recommended
32:44 - Patients recommend apps when they have a direct benefit to their health
35:43 - EULAR findings are consistent with the responses Deb and Tiffany collected about patient experiences with e-health apps
37:00 - Aurelie expects the field of e-health to develop rapidly in response to COVID-19 needs
39:33 - AiArthritis wants to hear from you about what existing e-health apps you like to use and what you would like see developed in a new app
41:14 - Tiffany thanks Aurelie and Deb for participating in the conversation on e-health and conferences
42:30 - AiArthritis lost all of its sponsors when the in-person AUTO Ball was cancelled due to COVID-19, so we are asking all of our listeners to please consider donating any amount to support the organization so that we can continue working for you
Wednesday May 27, 2020
Wednesday May 27, 2020
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE for the AUTO Ball Online to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases and to honor the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode of AiArthrits Voices 360 was recorded during the AUTO Ball Online event. For more information about the AUTO Ball, visit aiarthritis.org/AutoBall.
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Danielle Dass, recurring co-host of AiArthritis Voices 360 and career educator, as they provide an overview of the state of the COVID-19 pandemic. Tiffany and Danielle previously launched the COVID-19 special breakout series with “Episode 1: COVID-19 and AiArthritis” featuring special guest Joe Coe of CreakyJoints / Global Health Living Foundation. You can access all 10 of the other COVID-19 episodes on our website @ aiarthritis.org/covid19.
In this episode, Tiffany and Danielle discuss the current spread of the virus and Danielle explains the concept of epidemiological models and flattening the curve. They discuss the efforts to reopen some areas that had been previously locked down, as well as how you can protect yourself from infection if you live in one of those newly opened places. Tiffany discusses the ongoing frustration with testing availability and how much we still don’t know about the impact the virus has on survivors. She also discusses options for patients who have been infected by COVID-19 to get involved in ongoing clinical research efforts.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: “AUTO Ball - COVID 19”
0:33 - Tiffany welcomes listeners to today’s episode
1:36 - Today’s episode was recorded LIVE during the AUTO Ball Online event on COVID-19 and the AiArthritis Community
3:52 - Today Tiffany is joined by fellow patient co-host Danielle, a retired educator with experience teaching about pandemics and epidemics
7:13 - Danielle has also co-hosted COVID-19 episodes about flattening the curve, wearing masks, and a mini-sode about wearing gloves
7:30 - Visit aiarthritis.org/COVID19 to access any of the 10 episodes of AiArthritis Voices 360 on the pandemic
10:20 - A pandemic is any disease that has a wide spread of cases across the globe with no single epicenter
11:43 - COVID-19 has a higher mortality rate than other common viruses
11:49 - COVID-19 is unique among viruses because it is dangerous to healthy adults without underlying conditions as well as the traditionally at-risk populations
12:53 - The United States currently has more cases of COVID-19 than any other country, even when accounting for population and physical size
13:50 - India stands out globally for being successful with containment of the virus
14:20 - India’s aggressive lockdown strategy raises concerns about the economic impacts that could result, especially how the poor could be affected
15:17 - Danielle explains epidemiological graphs and the concept of “flattening the curve”
17:22 - The unfortunate side-effect of flattening the curve is it tends to slow the progression of the virus so the pandemic lasts longer
18:22 - Many people underestimated the challenge of staying home and being socially isolated
19:53 - As areas begin to reopen, people must be flexible and responsive to the needs of the medical community in terms of keeping the influx of new patients at a manageable level
20:39 - People must trust their local medical professionals’ assessments of their capacity to care for the infected
21:06 - Carrie Beach from Rheumatology Nurses Society will be a special guest on a future episode of AiArthritis Voices 360 to discuss the pandemic from the perspective of medical professionals
21:44 - AiArthritis patients are accustomed to social distancing and can provide guidance to others coping with social isolation for the first time
23:30 - The mortality rate has been lower than originally feared because efforts to flatten the curve have been successful
24:34 - The lack of availability of COVID-19 tests in the United States has been particularly frustrating for patients
25:09 - COVID-19 was originally believed to be a respiratory disease, but we now know that it can impact many other organ systems
27:00 - AiArthritis patients who know they had or believe they had COVID-19 should consider getting involved in the research efforts currently underway
27:53 - If you are living in an area that is beginning to reopen, please continue taking all safety precautions to avoid contagion. Just because an area is reopening for economic reasons does not mean that you are safe from the virus.
29:09 - Many people are only focusing on the death toll, but we have no idea how survivors will be impacted longterm from the virus
29:53 - To learn more about COVID-19, visit our AiArthritis COVID-19 Facebook group (COVID-19 & AiArthritis) or our website @ aiarthritis.org/podcast
32:28 - To learn how you can get involved in COVID-19 and AiArthritis clinical research, visit AiArthritis.org/covid19
34:50 - Please consider making a donation of any amount to support our ongoing work on COVID-19 or any of our projects
35:34 - Visit our Facebook page @IFAiArthritis to see all of the videos from the AUTO Ball Online