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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
Wednesday Mar 18, 2020
Wednesday Mar 18, 2020
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Danielle Dass welcome Joe Coe from Creaky Joints / Global Health Living Foundation to discuss COVID-19 and the potential impact on the AiArthritis Community. This is the first episode in a breakout series of AiArthritis Voices 360 episodes on COVID-19 and what you can do to protect yourself during the pandemic. Are you among the people considered to be at an elevated risk during this pandemic? How can social distancing help you and your community? What other topics will the series cover in the coming episodes? Tune in the find out!
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 19 – “COVID-19”
00:52 - Tiffany welcomes listeners and co-host, Danielle
02:13 - Danielle is a former teacher of AP Human Geography and has taught Population Studies, a topic which includes pandemics and epidemics
03:10 – Danielle is diagnosed with Rheumatoid Arthritis and Axial Spondyloarthritis, as well as an autoimmune liver disease.
03:20 - People who are immunosuppressed fall into the “high risk” category for COVID-19
03:44 - Tiffany and Danielle are joined by special guest, Joe Coe from Creaky Joints / Global Healthy Living Foundation
05:00 - Creaky Joints has been working to gather COVID-19 information and amplify the voices of the marginalized members of the chronic and invisible illness community
06:56 - No medical advice will be given in this episode.
07:02 - This is the first episode in a larger series on the COVID-19 pandemic
07:19 - The next episode will feature physicians and will address many common medical questions surrounding the virus
08:38 - Creaky Joints noticed early on that organizations were defining the at-risk populations in very broad strokes, which created a lot of confusion about who was actually at risk
09:36 - Creaky Joints has published a webpage called “Coronavirus Questions for Immunocompromised Patients and the Best Answers We Have Right Now.” This page is updated regularly and can be viewed at: creakyjoints.org/coronavirus
10:51 - Creaky Joints was told by several rheumatologists that patients should check with their doctor, but the impact of uncontrolled inflammation could be very detrimental so patients should not assume that discontinuing treatments is a good idea
12:44 - None of the research about coronavirus has been peer-reviewed, and all studies are very early
12:56 - Especially since scientists are studying some DMARDs as potential treatments for COVID-19, patients MUST speak with their doctor before making any decision about discontinuing their medications.
13:26 - There is a lot of misinformation being circulated on the internet, so our community needs reliable sources for information
14:20 - People may not interpret scientific studies correctly so word of mouth may not be very reliable
16:44 - A lot of the information being circulated is targeted for the general public and may not be the right advice for immunocompromised people
20:05 - AiArthritis patients who had teen or adult onset are very familiar with the concept of a “new normal,” and all of us understand social distancing already
20:40 - Some healthy people who compare COVID-19 to influenza don’t seem to understand that vulnerable members of the community are at risk from serious illness during any disease outbreak
22:03 - Negating an experience based on another bad experience undermines the work that all of us should be doing to listen to the voices of people impacted by epidemic diseases
22:19 - Responses to epidemics and pandemics should be centered on the voices of the people most impacted by them
23:40 - A pandemic is a disease that has spread across multiple countries and impacts a large percentage of the population
24:20 - Epidemics spread through contagion diffusion, which means everyone who contracts the disease is physically located in the same geographic area as all the rest of the patients with the disease
24:50 - Network diffusion is when the disease spreads along a network of individuals like when a disease spreads through a network of airports
28:07 - “Flattening of the curve” refers to slowing the spread of the virus
30:33 - Slowing the spread of the disease will prevent hospitals from being overburdened
30:49 - Social distancing protects individuals, but it also saves lives by protecting hospitals’ ability to respond to patients with the serious version of the virus
31:43 - Idris Elba tested positive for coronavirus despite having no symptoms
32:36 - Tiffany has been experiencing concerning symptoms, but she wasn’t able to be tested for COVID-19 due to testing shortages
34:25 - Nobody will know the mortality rate for COVID-19 until it has run its course
35:30 - COVID-19 is significantly more deadly than the seasonal flu
36:00 - Creaky Joints interviewed a woman in Texas who had exposure to people with COVID-19 but wasn’t able to be tested for the disease
38:00 - The situation with COVID-19 indicates that our society really needs to reevaluate our priorities and put an emphasis on public health and the value of medically fragile lives
39:30 - Our society needs to believe in science and trust journalists to combat the widespread dissemination of misinformation
41:14 - Autoimmune patients may experience severe morbidity or a loss of efficacy of treatments as the result of serious viral infection
42:12 - Patient advocates have been using #highriskCOVID19 on social media to raise awareness of people living with invisible diseases who are at elevated risk
45:05 - It has always been the policy of Global Healthy Living Foundation to practice social distancing whenever an individual is sick to reduce the spread of infections
46:20 - Society is currently having to grapple with the impacts of social isolation in a way that the chronic disease community already has
47:06 - Social distancing is an opportunity to build bridges with people who don’t understand the social isolation that can be a part of AiArthritis diseases
48:03 - Services that help support social distancing may be overwhelmed right now and unavailable to patients who normally depend on them, and creative solutions may be helpful
50:33 - Deep breathing exercises, movement, hydration, and avoiding smoking can help make your lungs be in the best shape possible in case you contract the disease
51:30 - Making mental health a priority and seeking needed support is also very important
52:30 - Everyone should be respectful of other people’s fears
53:25 - Creaky Joints has a webpage for coronavirus information (creakyjoints.org/coronavirus), or patients can receive social support from their Facebook page (@creakyjoints), instagram (@creaky_joints), or twitter (@CreakyJoints)
55:30 - IFAA is creating a group for COVID-19 information on Facebook (check the IFAA FB page @IFAiArthritis to access it) and launching AiArthritisVoices.org where patients can participate in an anonymous forum
56:22 - IFAA will make the AiArthritisVoices 360 platform available to all non-profits or rheumatologists who want to disseminate important information about COVID-19
57:28 - IFAA and CreakyJoints have teamed up with a number of non-profits and rheumatologists to support rheum-covid.org to create a registry for research into rheumatology and COVID-19
58:33 - Tiffany thanks Joe for participating in today’s episode
59:22 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
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