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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Sunday 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!
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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.
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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
Sunday Oct 04, 2020
Sunday Oct 04, 2020
This week join us for an AiArthritis Voices 360 first! In honor of World Arthritis Day on October 12, 2020, seven of your recurring Voices 360 co-hosts come together for an essential conversation about educating the public and the medical community about the many different types of arthritis that exist, especially the key differences between Osteoarthritis and AiArthritis. Thank you to Tiffany Westrich-Robertson, Deb Constien, Rick Phillips, Effie Koliopoulos, Patrice Johnson, Suz Schrandt, and Judy Flanagan for participating in this important round table discussion.
Our organization was enlisted in 2012 by EULAR to help bring more attention on World Arthritis Day to the autoimmune/autoinflammatory diseases that also included arthritis, as they felt the day was heavily focused on OA. Since then, we have tried to make sure on World Arthritis Day to really focus on the AUTO + Arthritis so our community is heard.
Join the co-hosts as they dig into misconceptions about arthritis, as well as how the lack of public awareness contributes to poorer quality of life for people living with AiArthritis diseases.
- What do you think of when you hear the word "arthritis"?
- How have misconceptions negatively impacted your life?
- Some push for eliminating the word arthritis from the names of certain diseases, in the hopes that the misunderstandings can be eliminated - but is that realistic? Oh, yes, we go there.
We are putting this conversation on the table so you can join us inside our new and improved AiArthritis Voices online community - starting October 12th, World Arthritis Day - to continue the discussion. Then, together, we can increase educational efforts to combat this issue and bring more understanding to arthritis types.
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 46 – “The A Word”
00:53 - Tiffany welcomes listeners
01:20 - Tiffany introduces her panel of patient co-hosts - including Deb, Rick, Effie, Patrice, Suz, and Judy
03:18 - Today’s episode will address the issue of differentiating arthritis types and the loaded nature of “The A Word”
04:00 - The panelists discuss the frustrations AiArthritis patients have because the word “arthritis” is usually associated with elderly people, but most AiArthritis patients have onset when they are young
05:35 - Patients may avoid the word “arthritis” when discussing their medical issues with people because so many people have mistaken assumptions about the word
08:44 - Other patients may be careful to say “Autoimmune Arthritis” to discourage people from thinking about traditional Osteoarthritis
10:46 - Due to poor understanding of the word “arthritis,” doctors may dismiss symptoms in young people or systemic symptoms of rheumatological disease that aren’t related to joint damage
15:17 - Suz discusses the importance of early diagnosis and treatment
18:37 - Treatment for Autoimmune Arthritis diseases usually focuses on preventing joint damage, but often the other systemic symptoms are ignored completely
25:09 - Patients may feel frustrated when they have to explain the difference between osteoarthritis and autoimmune arthritis to others
25:44 - Sometimes people are reluctant to see a Rheumatologist and will only discuss their symptoms with their Primary Care Physician, who may not be able to determine if joint pain is AiArthritis or Osteoarthritis
29:05 - The Stills Disease Community has recently tried to move away from the term “arthritis” due to frustrations around inability to get accurate medical care
31:11 - There are actually over 100 different types of Arthritis, but the majority of people only understand Osteoarthritis and aren’t even aware there are other kinds
32:31 - The public seems to have a better understanding of complex features of other diseases (like diabetes and asthma) than they do about arthritis
34:42 - The Diabetes and Medical communities have spent 20+ years educating people on the complex features of Diabetes to improve patient outcomes
35:58 - Because most people will experience Osteoarthritis at some point in their lives, it is the type of arthritis that is always going to be better understood than others
38:26 - The Lupus Community does not wish to be associated with the term Arthritis, even though Autoimmune Arthritis is a clinical component of their disease
40:09 - Sometimes people fail to understand the seriousness of AiArthritis because they believe patients never die from those diseases
41:24 - The 2020 EULAR conference had many seminars on the systemic nature of AiArthritis diseases because they cause more than just joint damage
42:49 - Many patients wanted the name of their disease changed to distinguish it from arthritis which requires a united global effort of all stakeholders
44:15 - In addition to issues with coding and research, rebranding diseases by name would consume a lot of resources that could be used for research or development of new medications
49:58 - Poor understanding of AiArthritis diseases by the public and medical community takes an emotional toll on patients who feel misunderstood and unsupported
52:36 - The invisible nature of AiArthritis diseases can also cause emotional and physical distress to patients as society places unreasonable expectations on them
54:12 - People are so uncomfortable talking about disease and death that they may inadvertently blurt out unsupportive commentary in a misguided attempt to lift someone’s spirits
59:47 - Join all of AiArthritis Voices 360 co-hosts to discuss this and other topics by visiting aiarthritis.org/aiarthritisvoices to join our new online platform which will be premiering on World Arthritis Day, October 12, 2020
Sunday Sep 20, 2020
Sunday Sep 20, 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 45 – “For All The Marbles”
00:53 - Tiffany welcomes listeners
02:36 - Today’s topic is an open invitation to all stakeholders in the AiArthritis community to get involved with our mission of trying to solve the most pressing issues impacting disease management and the journey of patients
04:15 - We want all the people involved in this community - not just the patients - to come to the table and help us address the issues our organization is trying to tackle
05:19 - Tiffany explains the AiArthritis logo and how it embodies the organization’s policy of bringing all voices to the table
09:46 - We need as many patient voices at the table for conversations as possible because Tiffany has not had the same experience with her disease that others may have had
11:28 - The organization and the Voices 360 show are evolving to bring more voices into the conversations
14:00 - On October 12, World Arthritis Day, the AiArthritis Voices online platform will open to all stakeholders. Previously it was only available for patients and parents of juvenile patients.
14:42 - 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
15:15 - All other stakeholders can also join the AiArthritis Voices Forum by visiting aiarthritis.org/aiarthritisvoices
15:41 - Tiffany 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