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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Wednesday 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).
Be sure to check out our top-rated show on Feedspot!
Sunday Apr 26, 2020
Sunday Apr 26, 2020
This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she announces a significant change in plans for the AUTO Ball. Listeners may recall that Tiffany announced in Episode 17 of our At The Table series that AiArthritis would be hosting a gala event to kick-off the celebration leading up to World AiArthritis Day on May 20th, 2020. Due to the COVID-19 pandemic, this event, like so many others, must transition to a virtual gathering for the safety of everyone involved.
Since its inception, AiArthritis has So as Effie Koliopoulis recently pointed out in Episode 20 of our At The Table series, we are already experts at social distancing and being productive from the confines of our homes.
AiArthritis believes that we can change the world from our sofa if we work together. We will embrace this challenge and show the world what a community of patient voices can do when we work together. Our goals remain the same: raise global awareness for AiArthritis Diseases, raise global awareness for the work of our organization, and raise funds to allow this valuable work to continue. This episode will tell you how you can get involved from the safety and comfort of your home to support the new and improved Auto Ball Online!
Learn more about all your AiArthritis Voices 360 Co-Hosts and how the International Foundation for AiArthritis is working to protect the AiArthritis patient community during the COVID-19 pandemic by joining our Facebook COVID-19 group.
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 25 – “Auto Ball Online”
0:52 - Tiffany welcomes listeners to today’s episode
1:16 - Tiffany is a patient living with non-radiographic axial spondyloarthritis
1:30 - One of the first projects that the International Foundation for Autoimmune and Autoinflammatory Arthritis accomplished was the establishment of World Autoimmune and Autoinflammatory Arthritis Day on May 20th 2012
1:46 - World AiArthritis Day actually lasts for 47 hours because it begins in the first timezone and ends in the last time zone on the 20th of May to bring an international awareness to our community of diseases
2:33 - World AiArthritis Day was designed to be conducted primarily online because most of the patients impacted by autoimmune and autoinflammatory diseases suffer from chronic fatigue which can make flexible working hours essential
4:51- the common experience for patients living with AiArthritis diseases has many similarities with the “new normal” experience of the general public while social distancing during the COVID-19 pandemic
5:44 - Many events are being pushed to online platforms due to the COVID-19 pandemic
6:13 - EULAR (European League Against Rheumatism) is hosting their annual conference online this year
7:18 - AiArthritis has been online since our inception because we felt it was the best way to unite a community that may or may not be able to meet in person
9:50 - AiArthritis had planned a gala called the Auto Ball for May 2nd at the National Museum of Transportation in St Louis, MO to kick off the celebration of World AiArthritis Day
10:17 - Tiffany explains all the activities AiArthritis had planned for the Auto Ball like live podcasting, prizes for contests, awards for thematic attire, and special patient guest, race care driver Angela Durazo
13:01 - Due to COVID-19, the in-person Auto Ball must be postponed to May 2021
13:45 - The three goals of the Auto Ball (raising awareness for the organization, raising awareness for AiArthritis diseases, and raising funds to support the organization) must be accomplished online during the pandemic
15:00 - AiArthritis invites the entire world to join us for the online version of the Auto Ball
17:14 - Special podcast guests like the Rheumatology Nurses Society, Forward Databank, and Washington University Rheumatology can still present special information for you
17:38 - Special presenters can still give speeches on Facebook Live
17:47 - Any museums or companies with auto affiliations or local car clubs are invited to participate
18:01 - Perhaps we can have a virtual car show!
18:32 - Celebrity guest Angela Durazo will still be participating online
18:47 - Visit https://www.aiarthritis.org/aiarthritisday to sign up to get involved
19:25 - Plan a creative auto-themed outfit for the event
19:45 - Registrants will receive language they can use on social media to make raising awareness easy and hassle-free
19:54 - The online event will run from May 16th thru May 20th
20:01 - Registrants will also receive information to enable them to participate in podcast events
20:22 - Registrants may submit stories about how AiArthritis Diseases have impacted their lives, and your stories may be featured on our website
20:43 - Be a virtual table sponsor for even more perks!
21:20 - Plan something local like a parade or a driveway party
22:00 - Tiffany thanks listeners for their support
Wednesday Apr 22, 2020
Wednesday Apr 22, 2020
This week join your patient host Kelly Conway, co-founder of International Foundation for AiArthritis, as she updates us all on the state of the COVID-19 pandemic as it relates to pets and their owners. Kelly is the author of Making Lemonade with Georgia Grace and has devoted many years to the care and love of her special needs therapy dog, Georgia. For more information about Kelly and Georgia, therapy dogs, and the ways animals can improve the lives of patients living with AiArthritis diseases, check out Episode 4: Pets and Chronic Illness.
In this episode, Kelly gives us valuable information on how animals and their humans are impacted by the COVID-19 pandemic. She gives a thorough review of what all owners should do to protect and care for their pets, service animals, or emotional support animals during the pandemic. She also discusses specifically what to do if you contract COVID-19 and must have contact with your service animal or emotional support animal or if you have no-one else to care for your pets.
Learn more about all your AiArthritis Voices 360 Co-Hosts and how the International Foundation for AiArthritis is working to protect the AiArthritis patient community during the COVID-19 pandemic by joining our Facebook COVID-19 group.
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 Apr 19, 2020
Sunday Apr 19, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Estela and Juana Mata, co-founders of Looms 4 Lupus, as they discuss the current lack of diversity represented in clinical trials and the need to include all demographics in trials so the therapies that go to market are representative of the real patient population who are using them.
Estela and Juana's expertise from symposium and conference attendance, in addition to Juana's personal experience in trials, helps us to understand both the ethnic barriers to participation and why diversity in clinical research is so important. Tiffany and the Mata sisters discuss continued efforts to include diverse groups in research, especially as we move towards precision medicine, by joining forces on projects like our award-finalist "Preparing Patients for Precision Medicine" project.
In this episode, we use our expertise as people living with AiArthritis diseases to explore trial inclusion challenges and explain the steps necessary to get diverse populations interested in research. The first step is education and building trust, the next step is getting doctors to talk more about trial options. These efforts are underway through our existing projects, but we need YOUR input - the patient experts - to complete them.
Do you want to learn more about participating in existing trials or future precision medicine trials? Would you like to join in on conversations with Estela, Juana, and Tiffany so, together, we can develop the educational materials necessary to help expand diverse inclusion in research?
Learn more about your Co-Hosts and how you can help us improve diversity in clinical trials HERE.
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 24 – “Ethnic Diversity Needed in Clinical Trials”
00:52 - Tiffany welcomes listeners and co-hosts Estela and Juana Mata, co-founders of Looms for Lupus
2:22 - Looms for Lupus is a non-profit organization that provides support for people living with Lupus and other overlapping chronic diseases like fibromyalgia or rheumatoid arthritis
2:40 - The Mata Sisters began Looms for Lupus after Juana was diagnosed with Systemic Lupus Erythematosus and Rheumatoid Arthritis
5:29 - Clinical trials are clinical medical research involving people and are either observational or experimental
5:57 - Clinical trials have four phases with increasing pools of participants
8:27 - Lack of awareness of clinical trials among minority communities may contribute to a lack of diversity in participant pools
10:45 - When Juana first told her mother she intended to participate in a clinical trial, her mother was concerned that she might be a human “guinea pig”
11:34 - One reason people may be hesitant to participate in clinical trials is that they don’t know if they will have access to the results of the study
12:40 - Juana found a clinical trial through a Facebook advertisement
13:10 - Participants in clinical trials may get access to excellent doctors
13:38 - Not all rheumatologists will encourage their patients to participate in clinical trials, but you can still become a participant based on your own interest
17:17 - Diversity in clinical trials is critically important because using a narrow pool of homogenous participants will skew the quality of the results since all patients are unique
18:56 - Lupus is more common among black, hispanic, and asian / pacific islander patients than white patients, so it’s a problem if clinical trial participants for Lupus treatments are predominantly white patients
22:15 - 12% of the American population is black, but only 5% of clinical trial participants are black
22:35 - Latinos make up 16% of the US population, but only 1% of clinical trial participants are latino
24:20 - Educating the entire community is necessary to increase support for participation
24:55 - Patients may also be afraid that participating in a clinical trial could harm them, so these fears need to be addressed to increase participation rates
26:51 - Juana first joined a clinical trial in the hopes of accessing a more effective medication for her Lupus
28:16 - Most participants in the AiArthritis community are seeking more effective treatments
28:38 - Patients with well controlled AiArthritis diseases are very reluctant to join clinical trials because they do not want to endanger their current effective treatment
29:14 - Not all clinical trials require patients to take new medications, so even patients with well controlled diseases can make a difference to the community by participating in surveys or other types of trials
31:17 - Some clinical trials use apple watches or fitbits to collect data from patients
31:26 - Juana and Estela are participating in the All Of Us Research program through the US National Institute of Health
34:30 - clinicaltrials.gov is a resource patients can use to locate clinical trials (even trials outside the US)
38:26 - COVID-19 has caused the medical community to embrace telemedicine, which may expand opportunities for clinical trials for people with transportation limitations
44:11 - If all members of the AiArthritis community participated actively in clinical trials, we would all benefit from having better treatments available sooner
44:50 - Minority patients must be afforded an opportunity to share their reasons for not being willing to participate in clinical trials because there is a significant history of discrimination of minority patients in medical research, as well as ongoing issues with discrimination of minority patients in healthcare settings
48:48 - One of the best ways to reach minority communities is to have members of those communities take leadership roles as spokespeople at symposiums or other educational events
52:37 - Diversity among patient advocates is critically important because people trust others who have as much in common with them as possible
53:36 - Healthcare providers need to be educated on clinical trials as well because patients are more likely to trust the information when it comes from the physician they already trust
54:15 - Physicians with a full patient load do not have time to research available clinical trials for each of their patients
54:39 - Clinical researchers should provide information to providers directly if they want to recruit more patients who fit a particular profile
55:27 - AiArthritis is working with some researchers from OMERACT to create a shared decision tool to facilitate conversations between patients and their physicians about clinical trials and precision medicine
57:52 - The Center for Information and Study on Clinical Research Participation (CISCRP) has a wealth of information about clinical trials at their website ciscrp.org
58:26 - Find the Mata Sisters on Twitter, Facebook, or Instagram @Looms4Lupus or on the web at looms4lupus.org
59:00 - Join the Mata Sisters for live Facebook chats every second Saturday of the month (in Spanish)
1:00:11 - Find AiArthritis @IFAiArthritis on all social media platforms or at aiarthritis.org/podcast
1:00:44 - Join our Facebook group or email us at podcast@aiarthritis.org to comment on this or other episodes
Wednesday Apr 15, 2020
Wednesday Apr 15, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week, join patient co-hosts Danielle and Kristen as they discuss the use of gloves to protect yourself from contracting COVID-19. Do gloves provide added protection from the virus? What is the “right way” to use them? Listen to our conversation about whether to wear gloves and how to wear them if you choose to do so. Then join us in our Facebook COVID-19 group to let us know what choices you are making to protect yourself and your family.
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 Apr 12, 2020
Sunday Apr 12, 2020
Welcome to AiArthritis Voices 360. This week join your patient co-hosts Danielle Dass and Kristen Ray as they discuss all things masks and COVID-19. What sorts of masks do healthcare providers need to keep themselves and their patients safe? What happens if hospitals run out of masks? Should people be wearing a mask when they leave their home during social distancing? Do cloth masks offer protection from the virus? Tune in for the answers to these questions and more as we seek to help you navigate this pandemic with our ongoing COVID-19 series.
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 21 – “Prevention Focus: Masks”
00:52 - Danielle welcomes listeners and patient co-host Kristen to the show
01:38 - Kristen introduces herself
02:12 - Kristen is a patient living with ankylosing spondylitis
03:58 - Kristen is an ophthalmology nurse
04:11 - COVID-19 can be spread by touching your eyes, nose, or mouth
04:38 - Today’s topic will deal with masks and whether wearing a mask can help protect you from contracting COVID-19
04:57 - Neither AiArthritis nor the Spondylitis Association of America will be issuing an official recommendation on whether or not patients should wear masks. The episode will provide reliable information that listeners can use to make their own decision regarding their own personal safety
06:27 - PPE refers to protective clothing like helmets, goggles, gloves, masks, etc that are designed to protect healthcare providers from infection or injury
08:09 - Everything has changed in terms of how HCPs see patients and use PPE
09:06 - Kristen’s office is only seeing emergency patients
09:10 - The amount of PPE gear needed to see patients has dramatically increased even though the patient load has been restricted to just emergencies
11:59 - Healthcare provider needs for PPE have increased, resulting in a global shortage of available gear
12:49 - Smaller hospitals in the US may not have the money to purchase more PPE because most of their income is derived from elective surgeries which have all been suspended
14:40 - Surgical masks are designed to create a physical barrier between the wearer and patients
15:13 - The N95 respirator mask creates a seal and then filters airborne particles so that the wearer is not breathing in any viral particles
16:25 - Neither surgical masks nor N95 respirator masks are intended to be reused
17:13 - People wearing N95 masks who have not been trained to use them will not be protected from COVID-19 with the same efficacy as a healthcare provider who has been trained to use them
17:43 - N95 respirator masks only filter 95% of viral particles when used correctly. With common usage, they are not significantly more effective than surgical or cloth masks.
19:58 - Never touch your face while wearing a mask
20:06 - Tie back hair so that you are not tempted to brush it out of your face
20:16 - Use medical tape to seal edges on the bridge of the nose and along the sides of the nose
21:19 - When putting on your mask, hold it by the straps or loops as far as possible from the piece that covers your face
21:30 - Position the mask along the bridge of the nose first, position it under your chin, and then fasten the attachments
21:42 - Do not touch the square portion of the mask that covers your face
21:53 - To remove the mask, repeat this procedure and again avoid touching the square portion of the mask
22:25 - Wash cloth masks immediately after every use
22:30 - DO NOT remove your mask after leaving a store, allow it to drape around your neck, or place it in your bag or purse as the masks may be covered with viral particles
23:08 - Wash hands before and after putting on or removing a mask
23:19 - Wearing a mask and using it improperly may put the wearer at more risk of contracting COVID-19 than not wearing it at all
24:32 - Kristen explains the 6 options the CDC recommends for hospitals who do not have enough masks for their healthcare providers
27:56 - Using cloth masks is the absolute last resort recommended by the CDC because cloth masks are not considered effective PPE and their ability to protect HCPs is unknown
32:01 - The CDC has started to recommend that members of the American public wear cloth masks when outside of their homes
32:16 - Up to 25% of the people who are spreading the COVID-19 virus are asymptomatic
32:55 - Cloth mask wearing in public has become very common in parts of Asia since the 2003 SARS epidemic
33:56 - Community-wide wearing of masks protects the community because cloth masks are effective at preventing the spread of the virus when worn by the infected person
35:50 - A 2015 study found that cloth masks only blocked 3% of viral particles
36:29 - Some studies performed recently found that cloth masks could block as much as 60% of viral particles, but the design of the experiment raises questions about whether that means cloth masks will protect the wearer from COVID-19
37:38 - Individuals must continue to take all previous precautions (social distancing, hand washing, etc) even when wearing a cloth mask
39:10 - Some rudimentary cloth masks can be fashioned out of a bandana and some hair ties
39:22 - Some homemade cloth masks include filters made out of vacuum cleaner bags, air filters, or even panty liners
40:00 - Never touch the square portion of the mask when putting it on or taking it off, and make sure to wash your hands before and after touching the mask
40:07 - Frequent hand washing is still the best way to protect yourself from COVID-19
41:13 - If you are going to wear a mask, you still need to clean all the surface areas around you because the mask does not provide 100% protection from the virus
41:38 - Wear your mask until you return to your house and can put it directly into the washing machine
43:22 - Cloth masks can pose a health risk to immunocompromised wearers
47:10 - If you want to donate homemade masks to healthcare providers, contact your personal physician’s office and ask if they are accepting them.
48:20 - Local police departments and grocery delivery workers may also be accepting donations of homemade masks
49:03 - Danielle invites listeners to join our new Facebook group @IFAiArthritis to learn more about this and other topics
49:17 - Private comments may be directed to AiArthritis via FB, Twitter, or Instagram message @IFAiArthritis or emailed to podcast@aiarthritis.org
49:31- Find this and all our episodes at www.aiarthritis.org/podcast, or visit www.aiarthritis.org/covid19 for all our COVID-19 related resources
Wednesday Apr 08, 2020
Wednesday Apr 08, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week join Effie Koliopoulos, the talent behind the Rising Above RA blog, as she talks about the similarities between the AiArthritis experience and the COVID-19 pandemic experience. Could your experience help you to empathize with the people directly impacted by the pandemic? Will this experience help others to better understand the challenges faced by our community?
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 Apr 05, 2020
Sunday Apr 05, 2020
Welcome to AiArthritis Voices 360. This week the show is celebrating 40 brilliant episodes by revisiting some of our previous conversations with experts in the field of autoimmune and autoinflammatory rheumatic diseases. We have featured rheumatologists, clinical researchers, and medical anthropologists in addition to our many patient co-hosts with expertise of their own. If you are new to the show, this will give you an opportunity to catch up on what our experts had to say about their work. Tune in and then join us to add your voice to these ongoing conversations.
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 20 – “Highlighting the Experts”
00:52 - Tiffany welcomes listeners to the show
01:02 - Today’s episode will be a highlight reel featuring four of the episodes that have previously aired on AiArthritis Voices 360 for those who may have missed them
02:40 - Tiffany introduces Dr. Apostolos Kontzias from the Center of Autoinflammatory Diseases
03:12 - Dr. Kontzias explains the distinction between autoimmune and autoinflammatory, which both stem from the immune system, just different sides (“innate” vs “acquired”)
04:32 - Autoinflammatory patients usually lack laboratory markers for autoimmune disease - despite inflammatory symptoms - which can cause a diagnostic delay
04:55 - Both autoimmune patients and autoinflammatory patients can present with arthritis and other common features (fatigue, varying degrees of fevers)
05:48 - Autoinflammatory syndromes are innate (of unknown cause, from the primal part of the immune system) and thus can present early in life, but some do not present until adulthood
07:14 - Either type of immune response may be initially triggered by environmental factors, but also environmental factors can trigger disease activity
07:44 - Viral infections can trigger autoinflammatory syndromes
07:57 - Menstruation can trigger increases in symptoms for female patients for either type of disease
08:27 - Some conditions “bridge” the two types and can have features of both adaptive and innate immunity.
09:46 - By definition, patients with autoinflammatory conditions have an immune system that does not recognize the patient’s own structural components of their cells
10:49 - Fevers and rashes are often markers for autoinflammatory conditions. General markers for inflammation without laboratory results that support traditional autoimmune diagnoses are also predictive of autoinflammatory conditions
13:09 - Tiffany thanks Dr. Kontzias for his time
13:21 - Tiffany welcomes Kaleb Michaud from FORWARD Databank
13:49 - Registries monitor patient journeys to benefit scientific understanding of rheumatic diseases
14:51 - Kaleb explains his decision to become a medical researcher
16:07 - Tracking patient symptoms over time can lead to more accurate diagnosis and treatment because patients may not be aware of incremental progression
17:48 - Long questionnaires encourage patients to thoroughly interrogate their own health and reflect on how they are doing
18:44 - One patient, Mary Felstiner, wrote a book titled Out of Joint about the experience of completing the questionnaires.
21:20 - People who participate in registry studies statistically live longer than patients who choose not to participate.
22:15 - Tiffany is joined by patient co-host Deb Constein and Dr. Aurélie Najm, a rheumatologist and clinical researcher currently serving as the co-chair for the European League Against Rheumatism’s Synovitis Study Group
22:49 – Aurélie introduces herself
22:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis
23:27 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient
24:07 - Tiffany and Deb are patient research partners for OMERACT
25:37 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient
26:45 - AiArthritis is interested in this research because we support anything that reduces delays in getting patients access to the right treatment
28:00 - Deb discusses her experience with joint biopsy procedures
30:38 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy
32:13 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.
33:40 - Volunteering for procedures to support clinical research is “an investment in the future.”
34:35 - IFAA seeks to help researchers develop the right protocols to recruit patient participants
34:54 - Visit aiarthritis.org/podcast to learn how you can help
35:14 - Tiffany introduces special guests Dr. Alfred Kim and Jerik Leung, who have done research on patient needs and communication barriers
35:56 - Tiffany explains the goals of the Rheumy Rounds Series
36:54 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects
38:44 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?
39:35 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers divined from test results. The physician has to review as much information as possible to arrive at a correct diagnosis.
40:34 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have
41:11 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication
42:30 - For many physicians, the emotional aspects of the disease aren’t actionable from a clinical perspective.
43:14 - Patients may be on the defensive at the outset of appointments due to previous negative interactions with rheumatologists
44:06 - Learning to advocate for yourself is necessary for patients living with chronic illnesses
46:06 - Mutual trust is critical between the patient and physician
46:59 - Occupational therapy support may increase patient compliance with their treatment plan and help them and their caregivers achieve a better quality of life
47:40 - Physicians may not address complaints from patients that they are not equipped to handle, but they should be able to refer the patient to someone who can help them
49:01 - Most common reasons people “fire” their doctor: they feel unheard or treatments are not meeting their expectations
50:27 - Both doctors and patients could potentially benefit from training on how to interact positively and productively with each other
52:56 - Tiffany invites listeners to join our new Facebook group @IFAiArthritis to get involved