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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 - We are creating a group for COVID-19 information on Facebook (check our organization's FB page @IFAiArthritis to access it) and launching AiArthritisVoices.org where patients can participate in an anonymous forum

56:22 - Our organization will make the AiArthritisVoices 360 platform available to all non-profits or rheumatologists who want to disseminate important information about COVID-19

57:28 - Our organization 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, join our new Facebook COVID-19 group at https://www.facebook.com/groups/IFAiArthritisCovid19/ or email us @ podcast@aiarthritis.org

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