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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 May 31, 2020
Sunday May 31, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Deb Majcher Constien, AiArthritis volunteer and patient advocate, as they discuss the importance of AiArthritis leaders attending conferences. At EULAR (European League Against Rheumatism) Congress in 2019, Tiffany and Deb attended a session on the existing efforts to advance e-health so we could reach more rheumatic patients and, in turn, improve their health.
They are joined by Aurelie Najm, rheumatology researcher with EULAR and OMERACT (Outcome Measures in Rheumatology). Aurelie was a panelist at the EULAR e-health session and previously made another guest appearance on AiArthritis Voices 360 to discuss obtaining patient consent for participation in clinical research. Check out Episode 9 “Changing The World With Your Knee” for more information on Aurelie’s clinical research and how you can get involved in that project.
In this episode, Tiffany, Deb, and Aurelie will discuss the ongoing efforts of EULAR and AiArthritis to involve the patient voice in the development of new e-health apps and the variety of ways these apps could be utilized by both patients and clinicians to improve treatment outcomes. Aurelie will also explain the value of e-health apps in light of the COVID-19 pandemic. Stay tuned to the end of the episode for information on how you can help researchers develop the next generation of e-health apps to benefit the AiArthritis community.
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 29 ”Conferences and E-Health”
00:52 - Tiffany welcome listeners and co-host, Deb Constein
3:30 - AiArthritis is transitioning away from the old IFAA acronym to make it more clear what the mission of the organization is to outsiders as we move into more spaces in the medical community
4:44 - Today’s episode is about attending conferences like ACR (American College of Rheumatology) or EULAR (European League Against Rheumatism)
5:27 - Deb was diagnosed with RA 37 years ago and is a registered dietitian so research and conferences are a passion for her
5:50 - Deb explains what she and Tiffany do at conferences
7:44 - Deb gives an overview of some of the things she has learned from conferences like a session on e-health
12:42 - Tiffany and Deb are joined by Aurelie to discuss her panel presentation from EULAR on e-health
13:18 - Aurelie says that researchers realized there were a plethora of health apps, but none of them provided adequate information on how they could actually help patients or clinicians
14:13 - Researchers discovered that rheumatology lacked the quantity and quality of health apps compared to cardiology or endocrinology and that patient voices were not included in the development process for e-health apps
15:28 - Half of panel respondents who had used e-health apps reported that they were not very useful
16:00 - EULAR issued recommendations on how e-health apps should be developed to include patients in the development process and to secure patient data
18:42 - Aurelie discusses the stark differences between how researchers were envisioning using e-health apps before COVID-19 and how they are trying to use them now
22:43 - Aurelie explains some of the recommendations from EULAR for developing e-health apps
25:25 - Aurelie breaks down the two main barriers to developing and implementing useful e-health apps
29:43 - Deb shares responses she received from listeners about which e-health apps they use and like
30:29 - Arthritis Power is one app that many respondents enjoyed using
31:25 - Catch My Pain is another app used for tracking symptoms that was recommended
32:44 - Patients recommend apps when they have a direct benefit to their health
35:43 - EULAR findings are consistent with the responses Deb and Tiffany collected about patient experiences with e-health apps
37:00 - Aurelie expects the field of e-health to develop rapidly in response to COVID-19 needs
39:33 - AiArthritis wants to hear from you about what existing e-health apps you like to use and what you would like see developed in a new app
41:14 - Tiffany thanks Aurelie and Deb for participating in the conversation on e-health and conferences
42:30 - AiArthritis lost all of its sponsors when the in-person AUTO Ball was cancelled due to COVID-19, so we are asking all of our listeners to please consider donating any amount to support the organization so that we can continue working for you
Wednesday May 27, 2020
Wednesday May 27, 2020
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE for the AUTO Ball Online to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases and to honor the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode of AiArthrits Voices 360 was recorded during the AUTO Ball Online event. For more information about the AUTO Ball, visit aiarthritis.org/AutoBall.
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Danielle Dass, recurring co-host of AiArthritis Voices 360 and career educator, as they provide an overview of the state of the COVID-19 pandemic. Tiffany and Danielle previously launched the COVID-19 special breakout series with “Episode 1: COVID-19 and AiArthritis” featuring special guest Joe Coe of CreakyJoints / Global Health Living Foundation. You can access all 10 of the other COVID-19 episodes on our website @ aiarthritis.org/covid19.
In this episode, Tiffany and Danielle discuss the current spread of the virus and Danielle explains the concept of epidemiological models and flattening the curve. They discuss the efforts to reopen some areas that had been previously locked down, as well as how you can protect yourself from infection if you live in one of those newly opened places. Tiffany discusses the ongoing frustration with testing availability and how much we still don’t know about the impact the virus has on survivors. She also discusses options for patients who have been infected by COVID-19 to get involved in ongoing clinical research efforts.
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: “AUTO Ball - COVID 19”
0:33 - Tiffany welcomes listeners to today’s episode
1:36 - Today’s episode was recorded LIVE during the AUTO Ball Online event on COVID-19 and the AiArthritis Community
3:52 - Today Tiffany is joined by fellow patient co-host Danielle, a retired educator with experience teaching about pandemics and epidemics
7:13 - Danielle has also co-hosted COVID-19 episodes about flattening the curve, wearing masks, and a mini-sode about wearing gloves
7:30 - Visit aiarthritis.org/COVID19 to access any of the 10 episodes of AiArthritis Voices 360 on the pandemic
10:20 - A pandemic is any disease that has a wide spread of cases across the globe with no single epicenter
11:43 - COVID-19 has a higher mortality rate than other common viruses
11:49 - COVID-19 is unique among viruses because it is dangerous to healthy adults without underlying conditions as well as the traditionally at-risk populations
12:53 - The United States currently has more cases of COVID-19 than any other country, even when accounting for population and physical size
13:50 - India stands out globally for being successful with containment of the virus
14:20 - India’s aggressive lockdown strategy raises concerns about the economic impacts that could result, especially how the poor could be affected
15:17 - Danielle explains epidemiological graphs and the concept of “flattening the curve”
17:22 - The unfortunate side-effect of flattening the curve is it tends to slow the progression of the virus so the pandemic lasts longer
18:22 - Many people underestimated the challenge of staying home and being socially isolated
19:53 - As areas begin to reopen, people must be flexible and responsive to the needs of the medical community in terms of keeping the influx of new patients at a manageable level
20:39 - People must trust their local medical professionals’ assessments of their capacity to care for the infected
21:06 - Carrie Beach from Rheumatology Nurses Society will be a special guest on a future episode of AiArthritis Voices 360 to discuss the pandemic from the perspective of medical professionals
21:44 - AiArthritis patients are accustomed to social distancing and can provide guidance to others coping with social isolation for the first time
23:30 - The mortality rate has been lower than originally feared because efforts to flatten the curve have been successful
24:34 - The lack of availability of COVID-19 tests in the United States has been particularly frustrating for patients
25:09 - COVID-19 was originally believed to be a respiratory disease, but we now know that it can impact many other organ systems
27:00 - AiArthritis patients who know they had or believe they had COVID-19 should consider getting involved in the research efforts currently underway
27:53 - If you are living in an area that is beginning to reopen, please continue taking all safety precautions to avoid contagion. Just because an area is reopening for economic reasons does not mean that you are safe from the virus.
29:09 - Many people are only focusing on the death toll, but we have no idea how survivors will be impacted longterm from the virus
29:53 - To learn more about COVID-19, visit our AiArthritis COVID-19 Facebook group (COVID-19 & AiArthritis) or our website @ aiarthritis.org/podcast
32:28 - To learn how you can get involved in COVID-19 and AiArthritis clinical research, visit AiArthritis.org/covid19
34:50 - Please consider making a donation of any amount to support our ongoing work on COVID-19 or any of our projects
35:34 - Visit our Facebook page @IFAiArthritis to see all of the videos from the AUTO Ball Online
Sunday May 24, 2020
Sunday May 24, 2020
Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts.
This inaugural gala, the AUTO Ball, was originally scheduled to take place in St. Louis, MO, our headquarters, at the National Museum of Transportation - Earl C. Lindberg Auto Museum. Due to COVID-19, the physical event was canceled. However, since this talk show was scheduled as part of the primary method to teach a larger community about our work, we hosted a series of 10 LIVE shows. This first episode re-introduces our organization to the world, from the perspectives of the co-founders, outlines the value we bring to the community and how YOU can get more involved.
Featuring AiArthritis CEO, Co-Founder, and Host of the AUTO Ball - Tiffany Westrich-Robertson - along with recurring AiArthritis Voices 360 Co-Host and AiArthritis Co-Founder - Kelly Conway - and Co-Founder Tami Caskey Brown.
You can learn more about the AUTO Ball here: www.aiarthritis.org/AutoBall
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!
Wednesday May 20, 2020
Wednesday May 20, 2020
We are proud to host World AUTOimmune & AUTOinflammatory Arthritis Day #aiarthritisday for the 8th year since we established this day in 2012.
Get involved throughout May 20th - as it travels through all time zones globally - that's 47 hours! We are playing on the word AUTO to DRIVE awareness that our diseases are FULL BODY.
If your disease was compared to a car - or auto part - how would you describe it? Are you a "classic" (text book), maybe a convertible because of all the brain fog, have flat tires (fatigue).... so many ways we can teach those who don't understand about our AUTO BODIES!
Start thinking and then post your photos or awareness comparisons using #aiarthritisday .
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 May 17, 2020
Sunday May 17, 2020
Welcome to AiArthritis Voices 360! This week, we are excited to invite you all to join us at the table LIVE for the AUTO BALL, where we sit down with patient Co-Hosts and others from around the world to talk about the important work we are doing to improve global awareness, early detection & diagnosis, precision medicine, and more! You will find our series of live broadcasts on Facebook @IFAiArthritis starting Saturday, May 16th through Wednesday, May 20th. For a complete schedule of events, visit www.aiarthritis.org/autoball and register today!
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).
Wednesday May 13, 2020
Wednesday May 13, 2020
This week join your host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the inherent desire of patients to make decisions with their doctors regarding treatment decisions without interference from insurance companies or governing agencies.
AiArthritis previously addressed this issue in the United States by leading the Ethics of Step Therapy investigation and concluded that while cost must be considered to ensure the “bucket” of healthcare funds are rationed appropriately, insurance companies justify choosing those low-cost treatments by citing research that has proven the drug is just as safe and effective as other options, proven usually through clinical trial research. But in our investigation, the patient experience was key to identifying the key to potentially putting treatment decisions back into the hands of their physicians.
Most patients with aiarthritis are “atypical” in that they would not meet the inclusion criteria required in the same clinical trials insurance companies use to cite to justify their cost-preferred treatment recommendations. Current trials only want patients who are “typical”, or fall under the label “general patient population”. Therefore, when a patient is not “typical”, the responsibility to determine the safest and most efficacious treatment should fall on their doctor, who is ethically obligated to treat patients based on their individual characteristics.
AiArthritis is building on these findings by teaming with FORWARD Databank (formerly known as the National Data Bank for Rheumatic Diseases) to conduct post-market research into patient subgroups to show potential differences in treatment response based on individual characteristics. AiArthritis also works on this issue as an Advisory Task Force Member for Let My Doctors Decide, a group led by American Autoimmune Related Diseases Association (AARDA).
Whether it is insurance companies in the United States or other non-medical groups deciding treatment use in other countries, the issue is the same. Patients want to work with their doctors to decide which treatment is best for them. If you believe this and would like to share your experiences or support on this issue, please send us an email or message us on social media.
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!
Sunday May 10, 2020
Sunday May 10, 2020
This week join your host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she explains the Method to Our Madness! This episode will give you an insider’s view of the AiArthritis organization and the way the AiArthritis Voices 360 talk show fits into the organization’s mission and projects.
In this episode Tiffany revisits one of the first mini-sodes we aired, “The importance of differentiating arthritis types” (November 29th, Mini-Ep2) to demonstrate how we put each topic “on the table” in Step 2 and then revisit it again in Step 5 - after inviting YOU “to the table’ to be part of the conversation.
The topic we are building the conversation around today is about the term “arthritis”. Too many people associate the term with a mild condition of aging and do not understand the physical or emotional damage that aiarthritis diseases can have on patients suffering from them. In addition to a lack of support, this lack of understanding can also cause costly delays in diagnosis and treatment when patients or their primary care physicians fail to recognize the symptoms of aiarthritis diseases. These delay diagnosis can result in low remission rates, high prevalence of disability, compromised quality of life, and inflated healthcare costs.
This topic is a primary mission point at AiArthritis, and that’s why it will be one of the feature LIVE AiArthritis Voices 360 topics we address in our first AUTO Ball ONLINE event (May 16 - 20th, 2020). So listen to this episode, then be sure to join us, along with special guests, as we take this discussion to Step 5 - one step closer to creating solutions!
The AUTO Ball is a gala to celebrate the 450 million people living with AiArthritis diseases worldwide, teach a bigger audience what we do and our impact, and raise awareness by hosting the event with a fun, auto-influence educational theme. This Ball was supposed to be a physical event, but due to COVID-19 we have taken it ONLINE. Now everyone can attend! So make sure to register (FREE) for a full agenda of events and to learn how you can get involved.
Visit www.aiarthritis.org/autoball to register (FREE) today! Even if you cannot make any of the live activities if you register we will send an event overview to you after-the-fact, complete with links to everything you missed.
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 27 – “Method To Our Madness”
00:47 - Tiffany welcomes listeners to today’s episode
1:36 - AiArthritis is a unique organization because it was founded by patients living with AiArthritis diseases to facilitate conversations between a global pool of patients and other stakeholders to solve the problems that impact education, awareness, public policy, or research
2:36 - The patient voice is always either leading the conversation or an equal participant in the conversations AiArthritis supports
3:17 - At aiarthritis.org/podcast, listeners can view a graphic highlighting the 6 steps AiArthritis follows to tackle problems
4:52 - The first step is to talk to other patients about identified problems
5:40 - Step 2 is to bring the topic to the podcast to expand the conversation and include our listeners
7:41 - Step 3 is to go back to the community and expand the conversation even further using social media platforms or our private online forum, AiArthritis Voices
10:13 - In Step 4, we take all of the ideas, suggestions, and stories collected and analyze the information to develop an action plan
10:50 - In Step 5, we invite other stakeholders to join us and work to develop solutions
14:49 - Today we are revisiting the subject of differentiating arthritis types because this conversation is ready to enter Step 5 of our process
15:45 - The word arthritis is an umbrella term meaning joint inflammation or joint pain
16:01 - If the general public associates arthritis with a natural aging process, they do not understand the plight of people living with AiArthritis diseases
16:44 - Arthritis from aging or that develops after an injury is degenerative arthritis or osteoarthritis
17:08 - Many people assume that arthritis is relatively mild, but both aiarthritis and osteoarthritis can be extremely painful
18:58 - Patients with autoimmune or autoinflammatory arthritis experience pain months or years before the damage is visible on imaging
19:58 - If Primary Care Physicians do not quickly recognize the difference between AiArthritis and osteoarthritis, patients experience diminished outcomes as a result of delayed diagnosis and delayed treatment
21:36 - Educating the general public about the difference between osteoarthritis and aiarthritis could also help improve diagnosis times and access to treatment because it would encourage symptomatic patients to see a doctor sooner
24:36 - You can register for the AUTO Ball at https://www.aiarthritis.org/autoball and be notified of when Step 5 of this conversation will take place LIVE on Facebook
Wednesday May 06, 2020
Wednesday May 06, 2020
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, to discuss the subject of distance medicine and electronic health. Tiffany shares her recent experience with distance medicine as a result of the COVID-19 pandemic and discusses some of the concerns and implications of expanding the use of telemedicine appointments, electronic medical records, and online patient portals.
The mission of AiArthritis is to ensure all patient experiences and perspectives are counted - and are included as equal to all other stakeholders - so, together, we can solve the most pressing problems impacting education, advocacy, and research. Telemedicine and electronic medical records are evolving rapidly, spurred in large part by the need to provide care to patients remotely during the COVID-19 pandemic. But what is working well, what is challenging, and what do we need to discuss further as the future of telemedicine evolves?
Addressing the benefits and barriers now can improve our healthcare experiences today and tomorrow. So join the conversation and share your experiences and concerns. What do you like or dislike about distance appointments or patient portals? What benefits do you see moving forward? Are there problems you would like to see addressed?
You can join the conversation today in our online Facebook Group - COVID-19 & AiArthritis, just search for the post featuring this episode. You can also join a discussion on this topic during our ONLINE AUTO Ball, our organizations’ first annual gala that, due to COVID-19, we are taking online May 16 - 20. Register NOW to attend the AUTO Ball (FREE) and we will email you a schedule of online events, including how you can get involved in conversations, awareness activities, and celebrate the 450 million people worldwide affected by AiArthritis diseases. www.aiarthritis.org/autoball
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!
Sunday May 03, 2020
Sunday May 03, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Pooja Panchamia, founder of the website and online community FieryBones, as they discuss the need for raising global awareness for autoimmune and autoinflammatory arthritis diseases.
FieryBones is a website dedicated to connecting people around the world suffering from autoimmune arthritis and helping them find hope, information, and inspiration. Pooja created it after her Rheumatoid Arthritis diagnosis left her feeling isolated and afraid of what the future would hold. Support groups were not available in India due to a cultural stigma associated with speaking publicly about illness, so Pooja decided to build her own support network.
She and Tiffany talk about the problems patients everywhere face as a result of a lack of awareness of autoimmune and autoinflammatory arthritis diseases. They delve into the benefits that can be gained from online support communities for patients and caregivers. They also discuss how patients can make an important difference, both in management of their own health and in raising global awareness by speaking up.
AiArthritis will soon be celebrating World AiArthritis Day by hosting our AUTO Ball Online! This is one way patients everywhere can get involved in our mission to raise global awareness for AiArthritis diseases. We need you to share your story. 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. One of the most persistent problems facing patients is a lack of understanding by the rest of the world. Too often people who are suffering are dismissed, ignored, or belittled because their family members, friends, or doctors do not recognize the symptoms of their disease. You can be a part of helping us change that.
So tune in, listen, and then visit www.aiarthritis.org/autoball to share your story today!
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 26 – “Global Awareness”
00:52 - Tiffany welcomes listeners to today’s episode
1:11 - Tiffany is a patient living with non-radiographic axial spondyloarthritis
1:35 - Tiffany welcomes today's co-host, Pooja Panchamia
2:02 - Pooja introduces herself and explains her website, Fiery Bones
3:49 - Today’s topic is the need for global awareness for autoimmune and autoinflammatory arthritis diagnoses
4:14 - The AiArthritis Voices 360 Podcast’s mission is intertwined with the mission of the AiArthritis mission to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community
5:48 - Raising awareness of aiarthritis diseases is critically important because a lack of awareness of these diseases can lead to lack of detection, delayed diagnoses, elevated healthcare costs, relationship conflicts, internal struggles, and poorer patient outcomes
6:30 - Lack of awareness of aiarthritis diseases can cause relationships to suffer because friends or family members do not understand the difference between tired and fatigued
8:45 - Patients find it frustrating when others try to offer advice on how to manage their illness, which they probably would not do if they were well educated on the nature of autoimmune and autoinflammatory diseases
12:36 - One of the reasons for this lack of awareness is that most people associate the term arthritis with osteoarthritis
13:20 - Most people assume arthritis is something you experience during old age
14:00 - Pooja was told that her symptoms were probably diet related or possibly psychosomatic, which is a very similar experience many other patients have reported
15:09 - Pooja realized her low-grade fevers were connected to RA after she was diagnosed, but no doctor ever pointed it out
15:32 - Fortunately Pooja’s RA was diagnosed fairly quickly by a doctor because she had traditional symmetrical presentation, which is unique to RA
17:08 - Pooja founded Fiery Bones out of a desire to understand her own illness better and how it would impact her life and future
17:55 - Hearing other people’s similar stories can make patients feel better and less isolated because you realize that you are not alone
18:52 - Patients who share their stories with Fiery Bones often want others to understand the unpredictable nature of their illness
20:36 - Another recurring theme in the patient stories was being dismissed by doctors and having delayed diagnosis
22:02 - One important lesson Pooja learned from collecting patient stories was to let go of any guilt about what you cannot do
22:36 - Another lesson was that patients must communicate effectively about their illness with their family, friends, and healthcare providers
25:50 - In India, there is significant stigma associated with speaking publicly about chronic illness or health conditions, so when Pooja was diagnosed there were no support groups or anything to make her feel like she wasn’t alone
29:52 - Patients living in rural areas of India may have significant difficulty getting access to a rheumatologist
32:00 - Some patients benefit from online support networks because it gives them a sense of community and more resources for managing your own illness
32:41 - Online communities can be very helpful to caretakers as well because it can help them to better understand what their loved one is experiencing
33:26 - Virtual support groups can also help patients learn more about their own illness
39:27 - AiArthritis and Fiery Bones want all patients to share their stories to increase global awareness of autoimmune and autoinflammatory arthritis diseases
40:23 - Pooja invites listeners to visit Fiery Bones at www.fierybones.com or on Twitter @fierybones
40:49 - Listeners can also connect via the AiArthritis website @ www.aiarthritis.org/podcast
41:43 - Tiffany invites all listeners to attend the virtual AUTO Ball Online May 16th-20th on Facebook @IFAiArthrits to celebrate World AiArthritis Day
43:12 - You can register for the AUTO Ball at https://www.aiarthritis.org/autoball and share your story
Wednesday Apr 29, 2020
Wednesday Apr 29, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Charis Hill, a professionally disabled writer, speaker, and patient advocate as they discuss the sensitive topic of preferred pronouns and misgendering non-binary and transgendered individuals.
Charis is a person who embraces non-binary pronouns (they/them/their) and speaks openly about the emotional experience of being repeatedly misgendered on a daily basis. Tiffany also speaks candidly about the difficulty she has had avoiding the use of binary pronouns even though she is accepting of non-binary people and wants everyone to feel welcome in the AiArthritis organization.
AiArthritis will soon be launching the sister site to this podcast: the AiArthritis Voices 360 online forum. The forum will be a private online space where all patients can be "at the table" with us every step of the way. Members will be able to join additional conversations and projects based on topics discussed on our AiArthritis Voices 360 talk show.
This platform will enable all persons affected by AiArthritis diseases to have a voice, regardless of geography, disease limitations, or prior advocacy experience. It is critically important to our mission at AiArthritis that all patients feel welcome to have their seat at our table, whether it be by participating in our online forum or by grabbing a mic and co-hosting a podcast episode. AiArthritis seeks to build a community where marginalized people feel safe, and candid conversations like this minisode are an important stepping stone. Please join us and help us create a strong, inclusive community where everyone is welcomed.
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).
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