18.2K
Downloads
137
Episodes
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 Feb 24, 2021
Wednesday Feb 24, 2021
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they welcome three special guests to the table for a new episode of the Voices 360 Special Series: Rheumy Rounds. They are joined today by three practicing adult rheumatologists: Dr. Al Kim of the Washington University School of Medicine, Dr. Vibeke Strand of the Stanford University School of Medicine, and Dr. Jeff Sparks of the Harvard School of Medicine. In this special episode of Rheumy Rounds, they discuss patient and rheumatologist vaccination hesitation and key education points, while providing insights to assess benefits and risks and promote shared-decision making strategies.
On February 10, 2021 the American College of Rheumatology published clinical guidance on COVID-19 vaccinations which suggests that all rheumatic disease patients should be vaccinated for COVID-19 and provided very specific recommendations regarding modifications needed - if any - to immunosuppressive therapies before and after vaccination. But most patients don’t read press releases from ACR. Not all patients will have an appointment with their rheumatologist between February 10th and the date they may be eligible or able to receive the vaccine in their specific location. This round table discussion seeks to prepare all stakeholders to participate in effective shared decision making conversations between patient and provider so that all members of the community can make the best decision for their own health, as well as the best decision for their families.
So pull up a chair as these three rheumatologists answer patient-provided questions about vaccine efficacy, side-effects, availability, and much more. Then consider getting involved. The COVID-19 Global Rheumatology Alliance is seeking participants for their survey on how the pandemic has impacted rheumatic disease patients. If you are an adult patient living with an AiArthritis disease, or the parent of a juvenile patient, you can sign up to participate in the survey here. But don’t stop there! We also want to hear from you. Reach out to us on social media (@ifAiArthritis on all platforms) or via email (to podcast@aiarthritis.org) and give us your insight on this critical question: how can we get more information to patients about the vaccine and the ACR guidance to facilitate shared decision-making?
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!
RheumyRounds is a concept developed by AiArthritis to bring rheumatology professionals & persons affected by AiArthritis diseases to the same table, as equals, to discuss important community topics that, if solved, would improve communication and positively impact outcomes. https://www.aiarthritis.org/rheumyrounds
________________________________________________________________________
Disclaimer: This is meant to be informative, but not to provide medical advice. Every person living with AiArthritis diseases must make vaccination choices based on their self-education then contact their rheumatologist or practicing physician and determine a solution together (shared-decision making). It is important you determine the best course of action for YOU, based on your own individual health situation.
___________________________________________________________________________
Episode 56 - Rheumy Rounds: Vaccination Hesitation
00:53 - Tiffany welcomes listeners.
01:56 - Tiffany welcomes her fellow patient co-host and co-founder of AiArthritis, Kelly Conway, and special guests Dr. Al Kim, Dr. Vibeke Strand, and Dr. Jeff Sparks.
02:28 - Dr. Al Kim is an adult rheumatologist at the Washington University School of Medicine in St. Louis, MO and the founder and co-director of the Lupus Clinic.
02:47 - Dr. Vibeke Strand is an adult rheumatologist and a member of the faculty at Stanford University Division of Immunology / Rheumatology, as well as a consultant in new product development in rheumatology.
03:32 - Dr. Jeff Sparks is an adult rheumatologist at Brigham and Women’s Hospital and Harvard Medical School.
04:22 - The idea of the AiArthritis Talk Show is to bring stakeholders to the table for a roundtable discussion, not to conduct interviews.
07:46 - The American College of Rheumatology put out clinical guidance on COVID-19 vaccinations which suggests that all rheumatic patients should be vaccinated for COVID-19 and that all medications rheumatic patients take should be continued with very few exceptions (listed in the document) because controlled disease and avoidance of flares is better for the patient when receiving the vaccine.
10:32 - Some patients are stuck in a misinformation limbo where they were told not to get the vaccine by their doctor before the ACR guidance was put out, but they have not heard that the information has changed.
11:00 - Have you seen any hesitancy among rheumatologists to recommend patients receive the COVID-19 vaccine?
11:18 - Dr. Kim has not seen any of his colleagues in St. Louis tell patients not to get the vaccine, but he thinks they may be in a privileged bubble because of their proximity to the medical school.
12:05 - Rheumatologists normally have control over whether their patients receive a vaccine, but with the COVID-19 vaccine they may not even be consulted by their patients in making the decision. Dr. Sparks says most of his patients seem eager to get the vaccine.
12:53 - Patients are reaching out to their rheumatologists about when they will be able to receive the vaccine, but most states are not prioritizing rheumatic patients for vaccination which causes frustration for both patients and their physicians.
13:19 - Dr. Strand thinks that the reliance on Telehealth appointments may also be limiting the amount of information patients are getting from their rheumatologists.
13:47 - Social media is the source of news for many people, which is a blessing and a curse because it opens up access to lots of information - including misinformation.
14:24 - The weather has also caused a lot of delays in vaccine access for many patients in the US.
15:17 - What if my second dose of the vaccine is delayed beyond the due date?
16:32 - Because of the way the immune system functions, it should be fine to get the second dose a week or even two weeks late.
16:54 - If I have to miss my second dose appointment, can I just make an appointment at a different location and get a different vaccine for my second dose?
17:24 - The vaccines are shipped in paired doses, and your second dose is usually reserved for you. You need to receive your reserved dose so that it doesn’t go to waste. Also there have been no tests on patients receiving one dose each of two different vaccines. It’s very important to receive the second dose that was reserved for you.
18:20 - Data from Israel is showing that vaccinated patients may not be carrying or shedding the virus at the same rate as unvaccinated people.
18:56 - Will my rheumatologist be checking in some way to see if I have an antibody response to the vaccine?
19:10 - No, because that information is not clinically actionable. We can’t do anything with that information, so there’s no reason to subject the patient to a test. We also can’t order the ingredients from the vaccine that would be necessary to test the patient for the presence of antibodies.
20:05 - The antibody response is also not the only thing that determines if a vaccine works for a patient. So even if we could test it, the information would not tell us the whole picture.
21:18 - A lot of the hesitancy Dr. Kim has seen has been coming from patients, either because they are concerned that the vaccine will destabilize their disease; they feel like social distancing is working fine for them; or they want to wait for more information before getting the vaccine.
23:36 - Kelly reports that many patients are claiming that the Pfizer vaccine has fewer side-effects than the Moderna vaccine, which is not true.
24:35 - It is important that patients get both doses from the same type of vaccine (2 doses of Pfizer, 2 doses of Moderna, etc.).
24:56 - Because of the lack of available vaccine doses, patients may not be able to choose which brand of vaccine they get. Is this a problem?
25:18 - There are many reasons patients may be hesitant to get the vaccine, and doctors need to try to understand those reasons in order to help those patients.
26:40 - Patients around the world have access to different vaccines than people here in the US. Eventually American people may have access to more than just the mRNA vaccines, and that may impact patient choice as well.
27:12 - The two mRNA vaccines - Moderna and Pfizer - behave very similarly. Some people have reactions to the vaccine, particularly the second dose, from either brand.
27:25 - Having allergies is not likely to cause you to have an anaphylactic reaction to the vaccine because the agent that they believe is causing those reactions is a common ingredient in household substances and foods.
27:54 - It’s extremely unlikely (less than 1% chance) that you will have an anaphylactic reaction to the vaccine.
28:38 - It is very easy to view the ingredients for the vaccines and compare the list to your known allergies.
29:05 - Having a bad vaccine reaction in the past does not mean you will have a bad reaction to the COVID-19 vaccine, and you’re much more likely to have a bad reaction to the COVID-19 virus than to the vaccine.
29:25 - The mRNA vaccines are very safe.
29:44 - Does it make sense to try and wait for a specific brand vaccine with a 95% effectiveness rate instead of one with an 85% effectiveness rate?
30:18 - Most vaccines have effectiveness rates of 50-70%, so all of the COVID-19 vaccines have efficacy rates higher than that.
31:12 - Those numbers are based on antibody responses, which don’t even reflect the entire response to the vaccine. All of the vaccines approved by the FDA are effective and safe.
31:59 - The vaccines are so hard to get right now that if you are offered a COVID-19 vaccine, you should get it regardless of what brand it is.
34:08 - Is there anything else our listeners should know about getting the vaccine?
34:28 - Many people with rheumatic diseases have autoantibodies, so people were worried that an mRNA vaccine could stimulate an autoantibody response. The data with COVID-19 and the vaccine suggests that it’s still much safer for rheumatic patients to get the vaccine than to get the virus. It doesn’t matter if you have autoantibodies. We still want you to have the vaccine so that you don’t get the virus.
35:39 - The phase III clinical trials for both Moderna and Pfizer were the largest clinical trials for any vaccine ever. The results should reassure all of us that these vaccines are safe and effective.
36:44 - We will still need to wear masks after receiving the vaccination until the pandemic ends.
37:14 - How can we as a community assess barriers and benefits of getting the vaccine? How does that impact shared decision-making?
38:25 - Patients need to discuss 3 things with their rheumies: what are your specific risks for getting the infection? Do you have comorbidities that elevate your risk for complications from the virus? What is your risk for infecting others? All of these questions should impact your decision to get the vaccine.
39:50 - The patient’s specific concerns should really influence the conversation the physician is having. Someone who is eager to get the vaccine should be having a very different discussion compared to someone who is concerned about getting the vaccine.
40:23 - The ACR guidance document states clearly that the benefits outweigh the risks, and all rheumatic patients should get the vaccine.
41:16 - Many patients just want to hear about the basics of the vaccine, but not all of their physicians have all of the information to have informed discussions with their patients.
42:10 - What happens if some rheumatologists refuse to endorse the ACR guidelines and continue to discourage their patients from receiving the vaccine? Should patients still pursue shared decision-making with a doctor who is not complying with ACR?
42:33 - Now that there is an official guidance document from ACR, hopefully everyone can utilize that to support those conversations.
43:22 - Are the ACR guidelines useful for rheumatologists in other countries that may not even be using the mRNA vaccine?
43:47 - The ACR guidelines are very relevant because the guidance is drawn from studying previous vaccines, not the mRNA vaccines specifically. It doesn’t matter whether it’s an mRNA vaccine or where the doctor is located, the science is the same.
45:15 - There are discordances among guidances issued by different organizations. The National Psoriasis Foundation recommended that most patients should continue biologic or oral therapy when receiving their vaccines, but they did not offer any specifics. The ACR guidance did offer specific guidance for psoriatic arthritis patients about biologic usage and the vaccine.
47:04 - We don’t really know the answer for sure about what patients should do with regard to their medications and the COVID-19 vaccine, but the vaccine is so effective that whatever you decide with your doctor should be fine.
48:39 - We don’t have any lab test to measure the efficacy of the vaccine for an individual patient because we don’t know what antibody titer would convey protection against the virus.
50:00 - There are already a large population of people who reject vaccines outright, and then they see news stories that focus on misleading interpretations of data. The ACR guidelines offer clarity and impartial information to patients trying to juggle multiple opinions and information sources to decide what is best for themselves and their families.
52:23 - What can we do to get the ACR guidance information in front of the patients who need it to make the best decision for their health?
53:27 - Disenfranchised patients in particular may not want to hear from their physicians at all. That’s one benefit to operating the vaccination clinics through community health centers.
56:30 - How can patients get involved with clinical research about COVID-19 vaccines?
56:43 - Dr. Kim is expecting to report preliminary data in 2-3 weeks on the efficacy of COVID-19 vaccine response in patients on immunosuppressants.
1:00:10 - Rheumatic disease patients and parents of juvenile patients can participate in a survey with the COVID-19 Global Rheumatology Alliance to help researchers understand the impact of the pandemic on rheumatic disease patients.
1:01:33 - Tiffany thanks Kelly, Dr. Kim, Dr. Strand, and Dr. Sparks for participating in this important episode.
1:02:29 - We want to hear from you on social media, especially Twitter where the rheumatologists are active. We are @IFAiArthritis on all platforms. How can we get more information to patients about the vaccine and the ACR guidance to facilitate shared decision-making?
1:02:50 - Visit aiarthritis.org/rheumyrounds to participate in a survey about your opinions on all of the topics we discussed today.
1:03:13 - If you are a practicing rheumatologist and would like to get involved in a future episode of Rheumy Rounds, there is a link where you can sign up to do that, and we would love to have your input.
1:03:32 - Find Dr. Kim on Twitter @AlHKim where he recommends that all patients receive these safe and effective vaccines.
1:04:07 - Find Dr. Sparks on Twitter @ JeffSparks where he encourages patients to discuss any concerns they may have about the vaccine with their doctor so that they will feel comfortable getting this safe and effective vaccine.
1:04:32 - Dr. Strand wants to remind everyone that the vaccinations are safe and very effective, and this is our best chance at going back to living life as we should be.
1:05:46 - Visit aiarthritis.org/vaccinations to get your questions about vaccines addressed personally.
Be sure to check out our top-rated show on Feedspot!
Sunday Feb 21, 2021
Sunday Feb 21, 2021
We are excited to announce the return of our Rheumy Rounds episode series, starting with a special episode release this Wednesday, February 24th! Joining us at the table are Dr. Al Kim, Dr. Vibeke Strand, Dr. Jeffrey Sparks, and returning co-host Kelly Conway - facilitated by patient host, Tiffany Westrich-Robertson (CEO of AiArthritis). In this special episode, we will be diving deeper into the perceived barriers of vaccination from both a patient perspective as well as that of the rheumatologist. How do we assess the benefits and risks of vaccination? What solutions are available to the AiArthritis community? All this and more will be discussed- be sure to listen this Wednesday and join the conversation!
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).
Sunday Feb 07, 2021
Sunday Feb 07, 2021
This week join your patient co-hosts Tiffany Westrich-Robertson, Charis Hill, Richard Howard, and Jennifer Walker for a round table conversation about the debate surrounding the nomenclature of the Spondyloarthritis disease umbrella. Tiffany is the CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis and a patient living with non-radiographic axial spondyloarthritis. Charis is a disability advocate, the author of the blog Being Charis, and a patient originally diagnosed with ankylosing spondylitis, and while would fit the current description (with radiographic damage), at diagnosis they did not have radiographic damage. Rich is the Chief Mission Advancement Officer for the Spondylitis Association of America (SAA) and a patient diagnosed with ankylosing spondylitis and meets the 'text book' description. Jen is a patient advocate and person diagnosed with both rheumatoid arthritis and non-radiographic axial spondyloarthritis.
In the past few years, there was a move to rename this group of spondy diseases as Axial Spondyloarthritis - which includes a continuum of non-radiographic and radiographic (radiographic synonymous with Ankylosing Spondylitis). This means the traditional Ankylosing Spondylitis term will soon be phased out. As persons living with spondyloarthritis conditions, and members of broader patient communities, they know not every patient is aware of these changes.
Tiffany, Charis, Rich, and Jen all attended an American College of Rheumatology (ACR) Study Group on this topic, but due to time constraints, were not able to fully share their opinions with the doctors and researchers in attendance. During this session, participants discussed the pros and cons of using the umbrella term "Axial Spondyloarthritis" (remove non-radiographic/radiographic subgroups) or keeping the differentiated subgroup names. Furthermore, doctors and researchers pointed out the name may not fully reflect the experience of patients (particularly those with less spine inflammation), and as a result, suggested possibly changing the name again. And finally, doctors posed the question, "What do we call it when we talk to patients, particularly those newly diagnosed? What type of education do we provide them?" As people living with these conditions, who are strong supporters of early diagnosis, education, and precision/personalized research, they have their own opinions about this name evolution. This episode serves as an extension of that session, but with a focus on what patients think, feel, and need...and we are asking all of you to share your thoughts and opinions, too.
- What are your thoughts on another name change? Pros? Cons? If you are a patient, were you even aware that Ankylosing Spondylitis is being phased out?
- What would you have liked to hear when you were diagnosed: an umbrella term or a specific variant name? Why?
- Patients - how should doctors educate us about these conditions?
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations. You can also weigh in on social media @IfAiArthritis on all platforms or by sending us an email @ podcast@aiarthritis.org.
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).
Episode 55: Patients Weigh In What's in a Name - the Spondy Evolution
00:53 - Tiffany welcomes listeners.
01:20 - Tiffany welcomes her fellow Spondyloarthritis patient co-hosts Charis Hill, Richard Howard, and Jennifer Walker.
03:51 - Today’s episode is a continued conversation from an American College of Rheumatology Conference study group about the nomenclature (naming) of Spondyloarthritis.
04:55 - Tiffany shares her diagnosis story and how the addition of the Non-Radiographic Spondyloarthritis diagnosis changed her disease journey.
06:35 - Jennifer had to fight with her doctor to get her diagnosis because rheumatologists are so resistant to acknowledging that patients could have both RA and AxSpa.
08:58 - Changing the name of a disease after patients have spent years fighting for a diagnosis can feel like the rug is being pulled out from under you.
12:10 - Charis feels strongly that having the entire community of patients, physicians, and researchers united behind one name is very important.
13:30 - Ankylosing Spondylitis is now a continuum of Non-radiographic axial spondyloarthritis to radiographic axial spondyloarthritis, but not everyone agrees that these new terms are sufficient to cover the full spectrum of disease presentation in patients with varying symptoms and physiological disease processes.
15:18 - This conversation is relevant for all AiArthritis patients because so many AiArthritis diseases have movements to change names or formally recognize differences in patient experiences.
15:52 - Prior to the name change, people with nr-AxSpa (who are more often women) were told they had “undifferentiated spondylitis,” and their disease progression - which was often more disabling than traditional Ankylosing Spondylitis - was not even acknowledged by their physicians.
18:00 - Rheumatologists often tell patients that the name of their disease doesn’t matter because it doesn’t change how it will be treated, which can be very frustrating for patients.
18:22 - Changing the name of a disease in a patient record can change the treatment options based on what private insurance or national health plans will cover for a given diagnostic code.
19:11 - Information on the internet that is accessible to patients is not always reliable or accurate because information changes so quickly as the research evolves.
25:11 - Doctors favor lumping all patients on the AxSpa continuum under one umbrella.
25:34 - One of the big questions put forth to the study group was: how do we educate patients?
25:58 - As a patient, Tiffany wants to understand where she fits on the continuum so she can build relationships with other patients and know where she is in terms of disease progression.
26:52 - Medical practitioners have a tendency to try and simplify things for patients, but that can be frustrating for people who want a depth of knowledge about their condition.
27:48 - Patient advocates have to juggle their own preferences, the need for scientific accuracy, and the larger patient community’s preferences.
30:02 - The Spondylitis Association conducted a survey of their members, and the feedback strongly indicated a preference to retain the “Ankylosing Spondylitis” name among people who were initially diagnosed that way.
33:08 - Specific names for disease conditions can be validating for patients, but belonging to an umbrella “family” of diseases is also a positive community experience.
34:05 - Over-specificity may be confusing for patients who don’t have a background in medicine.
36:50 - ICD Billing codes heavily influence nomenclature.
38:48 - Patients need to know what they have in order to participate in research projects or participate in conversations that impact their lives.
43:31 - Knowing more about the variants of the disease can help doctors treat patients more effectively.
44:45 - It might be helpful to have a pamphlet that covers the variants of the Spondyloarthritis umbrella for newly-diagnosed patients.
48:19 - It is naive in 2021 to have a disconnect between what doctors tell their patients and what is coded in the medical record since patients all have access to their electronic medical records now.
49:27 - Rheumatologists never distinguish between seronegative and seropositive RA, but patients very often specify which variety they have.
50:27 - The ACR study group did an informal survey of the rheumatologists in attendance and found that 50% of respondents were still giving nr-AxSpa patients an Ankylosing Spondylitis diagnosis.
50:54 - The AiArthritis community - including both patients and physicians - needs to get on the same page with regard to the nomenclature.
51:10 - The next step in this process should be to host conversations between patients and rheumatologists to get doctors to listen and react to the patient perspective.
52:32 - Patients with chronic diseases have long-term relationships with their physicians.
53:13 - Doctors often decide what they think patients need to hear, and it can negatively impact patient treatment when patients aren’t given all the information they need to advocate for themselves and participate in their own treatment decisions.
54:23 - Nomenclature decisions don’t just impact doctors and patients as regulatory agencies, insurance companies, researchers, and the pharmaceutical industry may all want to participate in this decision.
56:20 - Tiffany thanks Charis, Rich, Jen, and the listeners for joining us today.
56:46 - For more information, visit us on social media @IFAiArthritis on all platforms.
57:08 - We especially want to know what you would have liked to hear when you were diagnosed: an umbrella term or a specific variant name?
57:44 - If you are any other stakeholder, we would love to hear from you also on social media or you can email us @ podcast@aiarthritis.org.
58:50 - You can find Jennifer on Facebook, instagram, or Twitter @UnexpectedAdvocate or on the web @ jwalkerart.com.
59:40 - You can find Charis on Twitter @BeingCharisblog or on the web @ beingcharis.com.
1:00:25 - You can find the Spondylitis Association of America @Spondylitis on all social media platforms or on the web @ spondylitis.org or get in touch with Rich directly @RichAHoward on all platforms.
Be sure to check out our top-rated show on Feedspot!
Sunday Jan 24, 2021
Sunday Jan 24, 2021
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they sit down with Dr. Al Kim, Rheumatologist and Founder & Co-Director of the Lupus Clinic at the Washington University School of Medicine. Today’s episode will be a heart-to-heart conversation with Dr. Kim about questions, concerns, and mixed messages surrounding the COVID-19 vaccine.
Tiffany and Kelly, as people who live with AiArthritis diseases and participate in online patient communities, realized patients still had a lot of questions about the vaccine. How might their diseases and treatments affect its safety and efficacy? Should they even get it? They also discovered that not all rheumatologists were recommending the COVID-19 vaccine for patients, despite the general consensus that vaccination is suggested by groups like the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR).
So is the vaccine safe for us? How will our treatments interfere with the safety and efficacy of the vaccine, if at all? And what can we do as a community if rheumatologists are providing inconsistent and misguided advice that patients then share with each other, leading to more confusion and questions? So we turned to an expert who understands the importance of the informed patient’s role in a shared decision-making model.
Dr. Kim and his colleagues are leading a study called COVID-19 Vaccine Responses in Patients with Autoimmune Diseases which seeks to examine the quantity and quality of immune responses generated to the vaccine by autoimmune patients, as well as the safety of the vaccine for those patients. He provides answers to all of our patient-generated questions and provides actionable advice you can use to make the best decision for your own care.
Special thanks to Bristol Myers Squibb for sponsoring our COVID-19 & AiArthritis Series.
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!
________________________________________________________________________
Disclaimer: This is meant to be informative, but not to provide medical advice. Every person living with AiArthritis diseases must make vaccination choices based on their self-education then contact their rheumatologist or practicing physician and determine a solution together (shared-decision making). It is important you determine the best course of action for YOU, based on your own individual health situation.
_______________________________________________________________________________________
Show Notes: Episode 54 – COVID19 & AiArthritis Special Series - Join patients & rheumys to tackle questions & mixed messages surrounding the COVID19 vaccine.
Questions bolded were submitted by our patient community.
00:53 - Tiffany welcomes listeners.
01:20 - Tiffany welcomes her rheumatologist, Dr. Alfred Kim and fellow patient co-host, Kelly.
02:00 - Today’s episode is about the COVID-19 vaccine and AiArthritis patients.
02:17 - Patients are sharing many differing pieces of information - not all of it accurate or clear - about the safety and efficacy of the available COVID-19 vaccines, so our organization decided to put together this episode, and the information will be added as an extension to our existing website @ aiarthritis.org/covid19 - subpage Vaccines. We will be constantly updating this information as more resources become available.
03:44 - Dr. Kim is an adult rheumatologist on the faculty at Washington University School of Medicine, as well as the founder and co-director of the Lupus Clinic at Washington University.
04:34 - Kelly is a co-founder of AiArthritis, as well as a patient living with Rheumatoid Arthritis and the author of the blog As My Joints Turn: My Autoimmune Soap Opera.
05:42 - Patients will always talk to other patients when making decisions about their own care, so the widespread sharing of misinformation about the COVID vaccine, as well as patient fears and concerns about the effect the vaccine could have on their disease, should be addressed so that all members of the AiArthritis patient community can make the best decision for their individual care.
07:05 - Dr. Kim, can you give us some general background information on vaccines?
07:11 - According to Dr. Kim, vaccines represent the most important modern medical advancement.
07:55 - After the immune system fights off a pathogen, it creates a memory response of the disease and the best way to kill it. Vaccines leverage this function of the immune system to protect patients from specific diseases.
09:03 - Is the COVID-19 vaccine a live virus vaccine?
09:12 - There are four basic types of vaccines: live attenuated (which are not generally recommended for patients on immunosuppressant medications), inactivated, subunit, and toxoid vaccines.
13:03 - Inactivated, subunit, and toxoid vaccines are all safe for patients on immunosuppressive medications.
16:05 - Some patients have already made a decision without accurate information about the vaccine or based on either misinformation about the virus itself or poorly informed advice from their doctor.
16:50 - People only know what they know, but it’s dangerous when they don’t know what they don’t know because then they start acting thinking they have complete knowledge of a situation.
17:07 - “This is a real problem in my mind that there are doctors saying that [the vaccine is] too new.” This science is not new. It has been used for decades. Dr. Kim will elaborate on this point later.
19:30 - The COVID-19 vaccine is not “FDA approved,” but it does have an Emergency Use Authorization from the United States Food and Drug Administration, which effectively does the same thing.
20:10 - Kelly lost her father and uncle to COVID-19 in November and December of 2020, which influenced her decision to get the vaccine as soon as possible.
22:53 - Some patients have even received conflicting advice from different doctors they see, making it very difficult for anyone to make an informed decision.
24:10 - Physicians - like everyone - don’t know what they don’t know.
24:15 - The technology used in the COVID-19 vaccine is new for humans, but it has been used in animals for decades. People who say it is “new” are uninformed, and some doctors are making recommendations to patients based on misunderstandings.
25:21 - Dr. Kim’s faculty is trying to make sure that all doctors in their region understand that every rheumatologist should be offering the COVID-19 vaccine to all of their patients.
26:00 - How is the vaccine going to impact rheumatology patients? Will it cause patients to flare? Will it activate AiArthritis diseases that may be in remission or well managed? Could AiArthritis patients experience significant negative impacts as a result of taking the vaccine?
27:37 - The honest response is: most likely it won’t, but nobody can be sure on an individual level because studies are looking at population level statistics
28:09 - There are significant potential benefits to AiArthritis patients because we know that COVID-19 impacts rheumatic patients more severely than the general patient population.
28:35 - It is possible that patients may experience a rheumatic disease flare for up to a month after receiving the vaccine.
30:10 - The vast majority of rheumatic disease patients, regardless of their medication, will be fine to receive the vaccine and will not experience a disease flare or increased incidence of adverse events compared to the general patient population.
31:56 - If patients have a history of adverse reactions to biologics or other medications, should they be concerned about getting the COVID-19 vaccine?
32:27 - Because the components of the vaccine are very different than those used in biologics or other medications, these are unrelated situations. The likelihood of them having another reaction is very low.
34:36 - Should AiArthritis patients discontinue biologics or DMARDs before or after taking the vaccine to optimize the efficacy of the vaccine?
38:00 - Dr. Kim is advising his patients to continue their medications and receive the COVID-19 vaccine. Patients on Rituximab should assume that their vaccine response will be reduced and deal with that separately.
41:27 - One problem highlighted by the COVID-19 pandemic has been the need for a method of disseminating actionable and trusted information to physicians and patients in rapidly changing situations.
44:58 - Is it true that AiArthritis patients are likely to have reduced antibody responses to the COVID-19 vaccine due to immune suppression? Or that our medications will impact the effectiveness of the vaccine?
45:30 - It is possible that some patients on a few medications (specifically rituximab/Rituxin, methotrexate, and Abatacept/Orencia) may have reduced antibodies, but it is not clear that this will compromise the effectiveness of the actual vaccine.
47:17 - Dr. Kim and his colleagues are leading a study called COVID-19 Vaccine Responses in Patients with Autoimmune Diseases which seeks to examine the quantity and quality of immune responses generated to the vaccine by autoimmune patients, as well as the safety of the vaccine for those patients.
48:09 - The study will also look at how immune responses to the vaccine evolve over time and how immunosuppression impacts long term effects.
49:34 - There is a theoretical risk that patients on immunosuppressants may not be protected to new mutant strains of SARS-CoV-2, so the study will also seek to address this concern.
51:31 - Dr. Kim is hoping to be able to report early results of the study within a month and more detailed results possibly as early as Summer of 2021.
53:41 - Which COVID-19 vaccine should I choose?
53:59 - The Moderna and Pfizer vaccines are very similar, and patients should get whichever version they can access.
54:35 - There was a theoretical risk that the vaccine could have triggered flares in Lupus patients, but the stability changes made to the vaccine coincidentally made the RNA in the vaccine significantly less inflammatory. Lupus patients are now advised to get the vaccine if they can.
58:56 - Bottom line: Should I take this vaccine?
59:22 - The vast majority of rheumatic patients - regardless of medications - will likely have a positive response to the COVID vaccine with minimal issues concerning safety or flares.
59:42 - As previously noted, patients on rituximab/Rituxin, methotrexate, and Abatacept/Orencia may be the exception with regard to vaccine efficacy, but it is still a safe option for them that could convey some protection from COVID-19.
1:00:00 - Dr. Kim would like to see all rheumatic patients get the vaccine to protect them from the potential for severe impacts of COVID infection.
1:00:54 - According to Dr. Fauci, we will be able to relax public health measures (like wearing masks) when 70-80% of the US population has been vaccinated. Until then, everyone should continue taking precautions to avoid spreading the COVID-19 virus even if you have been vaccinated.
1:01:12 - Will I need another COVID vaccine next year?
1:01:25 - Dr. Kim will reach out to a colleague for an answer on this and update us. Follow our website @ aiarthritis.org/covid19 for these updates. Dr. Kim’s best guess is that the vaccine will not need to be re-administered every year because the virus does not mutate as fast as influenza (which does need to be done annually), but boosters may need to be redone every few years.
1:03:23 - This vaccine technology was already in place and was easily adapted, and the vaccines are relatively easy to make. Hopefully this information helps allay fears from people who were concerned that the vaccine was made “too quickly.”
1:03:48 - Tiffany thanks listeners for joining us today.
1:04:34 - If you have additional questions, email us @ podcast@aiarthritis.org or visit us on the web @ aiarthritis.org/covid19
1:04:55 - If you are a person living with these diseases or the parent of a juvenile patient, go to aiarthritisvoices.org and sign up to join our online community space where we will talk more about COVID-19 and all our other projects and events.
1:05:12 - If you love the show, please give us a rating and subscribe wherever you listen to podcasts.
Sunday Dec 27, 2020
Sunday Dec 27, 2020
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for Autoimmune and Autoinflammatory Arthritis, as she gives our annual “Year End Review” reflection. In honor of this unprecedented year, this episode will not be the usual briefing on the annual accomplishments of the organization. That information is still available on our website at www.aiarthritis.org, and we will be publishing an annual report very soon.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We seek to improve communication, research, and education and ensure access to the best treatments possible by listening to all voices and perspectives. If 2020 has taught us anything, it should be that everyone can be facing the same set of conditions and have different needs and perspectives based on their lived experiences. We thank you for your support of the show and the organization and look forward to hearing your perspectives in the future.
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: Episode 52 – “Unprecedented Year in Review”
00:52 - Tiffany welcomes listeners
01:12 - Today’s episode is a year end review for this unprecedented year
03:05 - Some things that are very common in our lives right now like masks and zoom happy hours were unheard of just a year ago
04:36 - Many people feel like others don’t understand their experience during the pandemic
05:39 - Tensions run high from the prolonged stress, economic strain, etc.
06:43 - AiArthritis will be putting out an annual report on our 2020 activities for those that want a detailed accounting of our organizational year in review
08:25 - AiArthritis patients struggles to connect with friends due to fatigue and pain, so normalizing zoom for socializing is a positive step for our community
08:45 - Hopefully the experience of the pandemic will allow others to understand what AiArthritis patients experience as part of their normal lives
09:40 - AiArthritis is focused on improving communication, research, and education and ensuring access to the best treatments possible by listening to all voices
10:05 - Tiffany thanks listeners for their support during this unprecedented year
Sunday Dec 13, 2020
Sunday Dec 13, 2020
This week join your patient co-hosts Danielle Dass, Mariah Leach, and Cheryl Crow as they bring an important topic from the American College of Rheumatology Annual Conference to our show - a session that Mariah and Cheryl led at the conference! This episode will be part of a series of planned episodes on postpartum challenges for new mothers living with AiArthritis Diseases. Today’s episode will focus on the emotional and physical challenges of breastfeeding.
Mariah Leach is the founder of Mama’s Facing Forward, a group dedicated to providing support and resources for pregnant women and mothers living with chronic illness. Cheryl Crow is an Occupational Therapist and the founder of Arthritis Life which seeks to provide daily living support for people living with AiArthritis Diseases. They will discuss the decision to breastfeed or formula-feed, resources for new mothers, safe treatment options while nursing, and ways to reduce pain and strain while nursing.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations!
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).
Show Notes: Episode 51 – “Oh Mama!”
00:52 - Danielle welcomes listeners
01:45 - Today’s episode is about breastfeeding with an AiArthritis Disease
02:09 - This episode is a continuation of Episode 11, which was about pregnancy with an AiArthritis Disease
02:23 - Danielle is joined today by Mariah Leach and Cheryl Crow who presented a session at the American College of Rheumatology Conference on supporting new mothers during the postpartum period
02:43 - Mariah and Cheryl introduce themselves
03:04 - Mariah had nowhere to go for support when she struggled as an RA patient in the postpartum period so she founded Mama’s Facing Forward, a Facebook group and website that focuses on pregnancy and parenting with chronic illness
04:18 - Cheryl is an Occupational Therapist and an RA patient who founded Arthritis Life to help arthritis patients navigate their daily lives
06:53 - Breastfeeding is one of the most common postpartum issues new moms want to discuss
07:14 - The decision of whether or not to breastfeed should be a personal one, but many new moms feel a lot of pressure from others to nurse their new baby
08:37 - Breastfeeding isn’t always the best choice for a new mom, especially one living with a chronic illness
08:59 - Fed is best. Choosing not to breastfeed is a valid option for any mom.
10:00 - The Fed Is Best Foundation is an excellent source for information about all feeding options, including breastfeeding, formula-feeding, and even using donor milk
10:39 - Breast is best in a vacuum, but no mother lives in a vacuum
12:36 - Currently there are many treatment options for AiArthritis patients that are safe to use while breastfeeding
13:56 - Women should never have to choose between medicating their AiArthritis disease and breastfeeding
14:13 - Moms who need to take medication while pregnant or breastfeeding should consult Mother To Baby (mothertobaby.org), a website-based resource that collects information to help moms make informed choices
15:15 - If you are experiencing difficulty while performing your activities of daily living (feeding, dressing, changing, or caring for your baby), an occupational therapist can help you find strategies for dealing with both emotional and physical challenges
16:12 - You may have to ask your doctor for a referral since not all doctors know that they can send patients to an OT for help with postpartum issues
17:24 - To reduce pain while breastfeeding, consider the ergonomics of your positioning as well as how you’re holding the baby
18:20 - Having an accountability partner in the home to help remind you to use healthy posture while nursing can be helpful to reduce strain and repetitive stress injuries
20:32 - If you will be bottle-feeding your baby, try to choose a bottle that is easy for you to open and close
20:50 - Moms who will be pumping may benefit from a handsfree breast pumping bra so they don’t have to hold the bottles for extended periods of time
21:13 - Try to choose clothing that is conducive to breastfeeding but does not stress your hands with the closures
22:50 - A breastfeeding pillow can be helpful for supporting ergonomic positioning while nursing, as well as reducing the need to support the baby’s weight while nursing
23:59 - Alternate positions like side-lying or the football hold can also be helpful if holding the baby in the traditional nursing fashion is causing pain for Mom
25:20 - If a position doesn’t work for you, it may be worth revisiting later because your preferences may change as the baby develops or even with a subsequent child
26:33 - If you want more information about this occupational therapy for AiArthritis patients, you can check out Cheryl’s website @ myarthritislife.net or find Cheryl on ticktock (@arthritislife)
27:20 - Mariah invites listeners with chronic illness to join Mamas Facing Forward on Facebook or find her on instagram and twitter (@mamasforward)
28:05 - Mariah and Cheryl will be back for more episodes on this topic soon
29:08 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org or visit aiarthritis.org/aiarthritisvoices to continue this conversation with us
30:05 - Danielle invites listeners to connect with us on all social media platforms @ IFAiArthritis or email us @ podcast@aiarthritis.org
30:17 - Danielle thanks Mariah and Cheryl for co-hosting today’s episode
30:37 - Please consider supporting the show by donating at aiarthritis.org/talkshow
The session from the American College of Rheumatology (ACR) 2020 led by Mariah and Cheryl is called Reproductive Health: Meet Women's Needs. Description: Addressing reproductive health needs is an emergent priority for the rheumatology community. New research provides guidelines for how to safely treat and counsel rheumatology patients about reproductive health. Still, women with rheumatic disease lack needed health information to make evidence-informed decisions about family planning. This panel session will outline the unique needs during the stages of pre-pregnancy, pregnancy and early motherhood of reproductive-aged women diagnosed with rheumatic disease.
Sunday Nov 29, 2020
Sunday Nov 29, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constein, and Patrice Johnson as they take us back stage at the American College of Rheumatology Annual Conference. This episode will focus on a session from ACR titled “Grit, Gratitude, and Grace” about the impact that positive psychology can have on disease and pain management for AiArthritis patients.
Researchers induced pain in healthy adult military cadets to study the relationship between mindset and pain perception. They found that subjects with more positive attitudes, resilience to adversity, and growth mindsets reported lower pain levels than those who did not share those traits. Scientists have also discovered a link between pain and mental health. Depression and anxiety can even trigger an inflammatory response and the corresponding pain in some people. But patients know that just telling someone to have a positive attitude does not help them, so Tiffany, Deb, and Patrice will dig into the specific ways that you can harness grit, gratitude, and grace to feel happier and experience less pain.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations!
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).
Show Notes: Episode 50 – “Grit, Gratitude, and Grace”
00:52 - Tiffany welcomes listeners
01:37 - Tiffany is joined today by Deb and Patrice, who attended the virtual American College of Rheumatology Conference with Tiffany
02:49 - Patients are increasingly demanding a “whole body approach” to treating AiArthritis Diseases which may include non-pharmacologic therapies
03:31 - One of the sessions at ACR discussed the effect of positive mindset on disease and pain management
06:38 - The speaker focused heavily on how individuals respond to adversity and why some people are more resilient than others
06:59 - When you experience adversity, what happens inside your body?
07:28 - People who are more resilient (ie have grit) tend to experience less pain
08:23 - People with military training tend to have strong resilience, so researchers studied grit in cadets by inducing pain in healthy subjects
09:13 - The cadets with the most positive attitudes had higher pain thresholds and more resilience to pain
09:40 - Other research has shown that depression and anxiety can trigger inflammatory responses and pain in subjects
11:30 - People with a fixed mindset (as opposed to a growth mindset) are more likely to feel depressed and have higher levels of pain
12:24 - There are two types of gratitude: worldly (where you are thankful for specific things) and spiritual (where you are thankful to a higher power for all you have)
13:09 - Keeping a 30 Day Gratitude Journal can help people experience less turmoil, less anxiety, and less pain
14:16 - Deb is thankful in some ways for her disease because it has connected her to so many people and experiences that are very rewarding
15:19 - Grace is a feeling beyond simple thankfulness where you identify a direction and purpose in life
16:35 - People who feel like they have a purpose in life reportedly experience less anxiety, less depression, and better sleep
19:00 - Tiffany, Deb, and Patrice share their self-identified character strengths
22:28 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this and continue this conversation with us
23:26 - Tiffany invites listeners to get involved in any of our projects by visiting us on the web at aiarthritis.org
23:40 - Please consider supporting the show by donating at aiarthritis.org/talkshow
23:54 - Tiffany thanks listeners for their support as AiArthritis Voices 360 celebrates our first Anniversary as a talkshow
Sunday Nov 15, 2020
Sunday Nov 15, 2020
Special Series: American College of Rheumatology (ACR) Scientific Meeting 2020, "Go with Us!" to Conferences program
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, and Patrice Johnson as they take us backstage at the American College of Rheumatology Annual Conference. Tiffany and Deb attended two sessions at the conference on Stills Disease, and they brief Patrice and the rest of us on what they learned. Regardless which "auto" disease you have, this conversation is important, as it provides an insider view of what is being taught to doctors to help them expedite diagnosis.
One of the most important take-away messages from the ACR sessions is that doctors need to hear patient stories (or Case Studies) to improve their understanding of our diseases - especially when they are rare, like Still's, or in cases where presentation mimics other conditions.
Join us as we continue attending conferences, like the ACR, in our AiArthritis Voices online community - "Go with Us!" to Conferences program. It's your turn to pull up a seat! Join Tiffany and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect.
Living with Still's disease? If you are a patient living with Stills or the parent of a juvenile living with Stills, AiArthritis wants to hear from you! Visit our Stills Disease Awareness project at aiarthritis.org/mystills where you can submit your Stills Disease story. There you will also find patient-reported Still's brochures and educational materials for download.
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).
Show Notes: Episode 49
00:53 - Tiffany welcomes listeners
01:42 - Tiffany is joined today by Deb and Patrice
03:02 - AiArthritis Voices Online Community members can “go with us” to conferences, including the American College of Rheumatology (ACR)
04:17 - If you are a person living with an AiArthritis disease, register at aiarthritisvoices.org to join the co-hosts behind the scenes at the ACR
06:36 - The Learn and Connect Section on aiarthritisvoices.org will give you access to a variety of topics covered at ACR
07:11 - Today’s episode will cover a topic from 2 sessions at ACR on Stills Disease
09:03 - Patients diagnosed after age 16 are said to have Adult Onset Stills Disease (AOSD), while patients diagnosed before age 16 receive a diagnosis of Systemic Juvenile Idiopathic Arthritis
09:45 - Stills Disease is the new umbrella term that encompasses AOSD and SJIA
12:39 - Stills Disease is rare and has historically been a difficult condition to diagnose
13:24 - Patients may be diagnosed with AOSD but recall having symptoms as a child, which complicated the diagnosis before the medical community adopted the umbrella terms of Stills Disease
14:20 - The pathology of the way the disease presents is largely the same regardless of the age of the patient
17:58 - Stills Disease is an autoinflammatory disease, which means there is no known trigger to the onset of the disease and results in more systemic symptoms
20:30 - Many Stills patients do not like being associated with the term “arthritis” because as many as 25% of them do not present with any arthritic activity
23:58 - For more information about Stills Disease, you can visit aiarthritis.org/mystills
25:02 - The ACR presenter recommended that patients and parents of juvenile patients keep a journal of symptoms to help doctors diagnose a problem effectively
29:13 - Most juvenile Stills Disease patients have onset before age 5
29:33 - Children that young do not have the communication skills to convey their symptoms, making journaling by the parents so critical due diagnosis
31:03 - Shared decision-making between doctors and patients is critical to satisfactory care
33:25 - Research has shown that active and uncontrolled autoinflammatory disease can act as a trigger for the adapted side of the immune system
35:00 - Stills Disease is a diagnosis of exclusion, meaning it can only be applied to a patient if autoimmune diseases have been eliminated as possibilities
38:26 - If you are a person living with Stills Disease or the parent of a juvenile Stills patient, we want you to share your story at aiarthritis.org/mystills
43:34 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this with us
44:31 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web at aiarthritis.org/talkshow or all social media platforms @IFAiArthritis
45:03 - Please consider supporting the show by donating at aiarthritis.org/talkshow
Sunday Nov 01, 2020
Sunday Nov 01, 2020
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 48 – “Support”
00:53 - Patrice welcomes listeners
01:28 - Patrice is joined by Effie and Rick
02:17 - Today’s episode is about support networks
02:43 - Patrice shares her story of living with AiArthritis without any support from her family
03:31 - Patients with AiArthritis may not be able to divorce their spouse if they rely on them financially or for health insurance
04:04 - The national divorce rate in the US is 40%, but it goes up to 75% when one spouse is chronically ill
04:25 - Women diagnosed with chronic illness are 6x more likely to be divorced than a male patient
05:00 - Patrice has built her own network of support among fellow patients since it wasn’t available from her family
05:51 - Volunteering may also provide an opportunity for patients seeking emotional satisfaction
06:19 - Rick shares his support story of being married to a supportive spouse
07:10 - For Rick, the point where he had to cease working was one of the most emotional times for he and his wife
07:59 - Rick doesn’t believe he could live without his wife’s support
09:19 - Effie shares her story of being a single individual in need of support for JIA/RA
10:24 - Loved ones of patients also need support
11:17 - AiArthritis diseases don’t just impact the person who has it, but also everyone around them
11:33 - The co-hosts discuss the issue of demonstrating grace in relationships
12:58 - Patients may feel they need to educate their children in particular since there may be genetic components to AiArthritis Diseases
13:27 - Patients may be plagued by guilt or regrets and need to forgive themselves before they can show grace to others
14:45 - Effie explains Spoon Theory
16:27 - It’s important to forgive other people for not understanding what it is like to live with a chronic illness
19:27 - Knowledge about autoimmune diseases - especially the fact that they aren’t a result of poor choices - is much more available now than it was in previous decades
20:33 - Older generations may be less likely to share about their diagnosis or ask for or offer support
22:36 - An AiArthritis diagnosis doesn’t necessarily define an individual
23:05 - It might be helpful for future generations of a family if a patient keeps a journal of their diagnosis and treatment journey so that this information and knowledge from experience isn’t lost
25:29 - Patrice thanks Effie and Rick for joining in the conversation today
25:43 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
26:15 - Patrice thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
26:38 - Find Rick at RADiabetes.com or on Twitter (@LawrPhil) or on Facebook
26:51 - Find Effie at RisingAboveRA.com or on Twitter and Instagram @RisingAboveRA
27:29 - Please consider supporting the show by donating @ aiarthritis.org/podcast
Sunday Oct 18, 2020
Sunday Oct 18, 2020
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, for a special AiArthritis Watch Party for the announcement of the winners of the 9th Annual WEGO Health Awards. The WEGO Health Awards were created to embody the mission of WEGO Health: to empower patient leaders by recognizing their contributions to the field of healthcare. There are 16 categories of awards that this year included over 13000 nominees and 96 finalists.
AiArthritis is thrilled to announce that we won the 2020 WEGO Health Award for Best Team Performance! We are so grateful to all of our volunteers, staff, and supporters for making this award and all of our work possible. Our mission at AiArthritis is to center the patient voice in ongoing conversations about the issues facing the AiArthritis community and to bring as many voices to the table for those conversations as we can. Whether you have been with us from the beginning or are listening to AiArthritis Voices 360 for the first time, we want you to be a member of our family because only together can we move mountains and shape the future of AiArthritis patient health.
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).
Show Notes: Episode 47 – “Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020”
00:53 - Tiffany welcomes listeners
01:05 - AiArthritis was co-founded by Tiffany in 2011, after she started an awareness campaign to let people know that Arthritis is not just a disease for elderly people.
02:59 - We are a family, and all of our volunteers are members of that family.
04:03 - AiArthritis was 1 of 13000 nominations and 96 finalists for the WEGO Health Awards this year.
05:40 - Hear the reaction when our volunteers found out we won the WEGO Health Award for Best Team Performance.
14:51 - Tune in at AiArthritis.org/talkshow to listen to any of our previous episodes or subscribe wherever you listen to podcasts