Arthritis Voices 360: Official Talk Show for the International Foundation for Autoimmune and Autoinflammatory Arthritis

COVID-19 & AiArthritis

Special AUTO Ball Series

AiArthritis Voices 360 Full Episode #29

AUTO Ball Special Series Episode #2

Air Date: May 27, 2020

Este episodio se grabó en directo durante nuestra primera Gala Anual AUTO Ball, un evento cuyo objetivo era dar a conocer nuestra organización a un público más amplio y recaudar fondos para apoyar nuestras iniciativas en 2021. La versión en podcast (audio) que aparece a continuación ha sido editada por el equipo de producción. Si prefiere ver la grabación en directo (vídeo), también está disponible. NOTA: Hubo problemas técnicos durante la sesión, por lo que la versión en vídeo presenta varias interrupciones.


En este episodio, retomamos nuestro trabajo para ayudar a las personas afectadas por la artritis autoinmune a sobrellevar la situación de la COVID-19, con la participación de Danielle, copresentadora del programa, voluntaria de la Fundación Internacional para la Artritis Autoinmune, exeducadora (enseñando geografía, incluyendo pandemias) y persona que vive con artritis autoinmune. En este episodio, Tiffany y Danielle conversan sobre la propagación actual del virus y Danielle explica el concepto de modelos epidemiológicos y cómo aplanar la curva. Hablan sobre los esfuerzos para reabrir algunas áreas que habían estado confinadas, así como sobre cómo protegerse del contagio si se vive en uno de esos lugares recientemente reabiertos. Tiffany comenta la frustración que persiste con la disponibilidad de pruebas y lo mucho que aún desconocemos sobre el impacto del virus en los supervivientes.


Nota: También queremos agradecer a nuestros productores, Bill Dass y Ryan Reeves, que aparecen en la foto de arriba.


LISTEN TO THE FULL, PRODUCED EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 
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Mira las imágenes sin editar del AUTO Ball.
Luego, siéntate y mira el episodio en nuestra página de YouTube. NOTA: este es material sin editar, incluyendo algunos cortes de luz.

WATCH NOW: Live Episode from our Youtube Page

Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

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What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

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Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

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The AiArthritis Voices Program

Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.


AiArthritis Voices is our 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.


If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect. 

Join AiArthritis Voices

Show Notes: Episode 29 - AUTO Ball LIVE: Revisiting our work with COVID-19 & AiArthritis


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


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.


JOIN TODAY! 

 

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!


Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?

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Show Co-Host: Tiffany Westrich-Robertson

Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels. 

Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.

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Show Co-Host: Danielle Dass
Danielle Dass es educadora de profesión, esposa y madre de tres hijos. Tras años de investigaciones médicas infructuosas, le diagnosticaron artritis reumatoide y colangitis biliar primaria. Se dedica a educar a otros pacientes con artritis reumatoide sobre la importancia de la salud hepática y las pruebas metabólicas. En su tiempo libre, también presenta un podcast con su esposo y su hija de 10 años sobre la importancia de la historia del cine para las nuevas generaciones.
Escucha el podcast de Danielle:https://bacea.podbean.com/

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