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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 Aug 30, 2020
Sunday Aug 30, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Juana and Estela Mata, co-founders of Looms 4 Lupus, as they discuss the complicated issues surrounding supporting patients living with autoimmune and autoinflammatory arthritis diseases and their loved ones.
Looms 4 Lupus is an organization dedicated to providing an environment for education and outreach to Lupus and Fibromyalgia survivors and their family members through multiple avenues such as hands-on workshops, informational clinics, bilingual resources, and psychosomatic support groups.
On this episode, Tiffany, Juana, and Estela talk about the need for support for AiArthritis patients from their inner circle of family and friends, as well as the support needs of people who have a loved one with a chronic illness. They discuss the importance of open communication in receiving and providing support and the need for raising global awareness for AiArthritis diseases so that friends and family members of people living with these diseases can better understand their loved ones needs and limitations.
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. We need you to share your story.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 43 – “Support - It’s a Family Affair”
00:53 - Tiffany welcomes listeners
01:30 - Tiffany is joined today by Estela and Juana Mata, co-founders of Looms 4 Lupus
2:40 - Today’s topic is support for loved ones who are AiArthritis patients
2:47 - Tiffany explains the way the talkshow and the AiArthritis organization approaches projects to help improve the lives of AiArthritis patients
4:18 - Estela and Juana discuss their experience as a family supporting Juana’s battle with Lupus and co-morbidities
5:48 - Family members of AiArthritis patients also require support
9:43 - Support may look very different from one family to the next or even among different members of the same family
13:57 - Family members may need assistance to find the best way to help and support their loved one living with an AiArthritis disease
16:30 - Diagnoses that are more familiar to people like cancer tend to illicit immediate support because people may feel more empathy for conditions they understand
18:18 - AiArthritis patients may face judgment from others because people don’t understand their disease or their limitations
19:01 - Patients sometimes feel pressure to be performative with their illness so that their inner circle will be more supportive
22:52 - Communication between the patient and the family is critical to establishing adequate support
31:24 - It may be more difficult for male patients to ask for or accept the help they need from their loved ones
32:28 - Counseling and support groups can be very beneficial in helping families navigate figuring out how to support each other effectively
35:39 - To share your story on this topic, visit our website at aiarthritis.org/podcast
35:51 - If you are living with an AiArthritis disease, check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts
36:28 - You can also find Estela and Juana @looms4lupus on all social media platforms or by visiting their website at looms4lupus.org
37:27 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
Sunday Aug 23, 2020
Sunday Aug 23, 2020
Join TIffany and Rick as they address the challenges involved as Treat 2 Target has emerged from aggressive treatments for a larger population to treating per the individual and based on the complexity of each disease.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 42 – “Treat to Target Today with Complex Diseases - Is it possible?”
00:53 - Tiffany welcomes listeners
01:22 - Tiffany introduces Rick, a fellow patient who has Ankylosing Spondylitis and attended a virtual EULAR conference with Tiffany
3:00 - Rick really enjoyed the opportunity to participate in EULAR virtually since he might not have had the opportunity to attend in person otherwise
03:44 - Rick and Tiffany both attended a hot topic session at EULAR called Treat to Target in AxSpa: Myth or Reality?
04:49 - Tiffany and Rick explain the history of “Treat to Target” as a research initiative within the realm of AiArthritis Disease research
10:22 - Tiffany and Rick share key takeaway points that they learned during the Treat to Target session
16:34 - The study presented in the session had some problems in its design that may have impacted the quality of the results
19:58 - Rick discusses his appreciation for the researchers’ ability to recognize and address the limitations of their own study
21:56 - With “Treat to Target” doctors were given specific criteria for treatment and followed up with patients every 4 weeks whereas the “Usual Care” group included doctors who treated their patients however they wanted to treat them and followed up every 3 months. Doctors within the Usual Care group may have been AxSpa experts who were using the same treatments as the other group.
23:24 - Rick discusses the experience of patients who are never even treated by a rheumatologist
25:49 - Tiffany gives an overview of the second portion of the seminar which covered controversies and myths in Treat to Target discussions
28:46 - Accurate disease diagnosis and identification of co-morbidities is essential to implement a treat to target strategy
29:03 - Remission and removal of treatments is the ultimate goal of treat to target strategies, which is a relatively novel goal in rheumatology, but early diagnosis and aggressive treatment is usually necessary to achieve remission
30:26 - The target of treatment may change over time as co-morbidities develop, as the disease progresses or as treatment becomes more effective
32:06 - The second study presented in the seminar lasted 12 years, and researchers had a difficult time keeping participants enrolled in the study for the full duration
36:07 - Forms that patients fill out at rheumatology appointments to measure disease activity are important for clinical researchers, yet doctors are not implementing these forms correctly (or at all) so researchers aren’t able to collect the data they need
41:55 - Numeric pain scales may not be the best way to track AiArthritis pain as a disease management tool
46:34 - It is important to ensure that patient data collection forms are never used by private health insurance companies or public health officials to penalize rheumatologists for the quality of service they are providing to their patients as that is not the purpose of those forms
48:10 - The ideal goal of treat to target is precision medicine
48:30 - The lack of definitive diagnostic measurements like bloodwork or imagine with AxSpa complicates any treatment and research
50:01 - Tiffany thanks Rick for co-hosting this episode
50:12 - Rick is a contributor to rheumatoidarthritis.net, ankylosingspondylitis.net, and radiabetes.com
50:51 - Check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts
51:38 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
Sunday Aug 16, 2020
Sunday Aug 16, 2020
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Sunday Aug 09, 2020
Sunday Aug 09, 2020
Today Tiffany talks about Posters & Abstracts, or summaries of research, thousands published annually just within the rheumatology community. So, unless the poster is featured in a session, attendees must search the poster database to learn about recent, current, or ongoing research that may be of importance to know.
As we continue our tour of the EULAR scientific conference*, we are inviting patients from around the world to join our team in patient-led Poster/Abstract research reviews. During today's show, Tiffany simulates the simplicity of viewing this short research summary and the value associated with patients (and patient organizations) who are privy about current research efforts.
Poster/Abstract selected for review: Evolving the Management of RA (eRA) program: Educational tools to support daily practice (of rheumatologists)
Listen to the episode to hear the review and to get involved with AiArthritis in expanding research within the patient 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).
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*Since June, our team has been learning from the research presented at the European League Against Rheumatism (EULAR) 2020 annual scientific e-Congress ... and we are inviting those diagnosed with our diseases - and parents of juvenile patients - to join us! Live and online research reviews, watch parties, and more. Sign up today by joining https://aiarthritisvoices.org or learn more at https://www.aiarthritis.org/go-with-us-to-eular-2020.
To learn about RheumyRounds, the break out pilot series for this Talk Show that unites the patient and rheumatology professional "at the table" as equals in conversations that solve problems to improve communication and community outcomes. Want to get involved with RheumyRounds? Learn more at https://www.aiarthritis.org/rheumyrounds.
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AiArthritis Voices 360 is the official Talk Show of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). Our mission to help others, like us, affected by AiArthritis diseases, have a voice alongside other stakeholders as equals, so together we can solve the problems that impact education, advocacy, and research.
Donate
Please consider donating so we can continue the work we do to bring you this show, as well as all the other projects we do at our organization. Thank you in advance for your support! DONATE
Sunday Aug 02, 2020
Sunday Aug 02, 2020
- Preparing Patients for Precision Medicine Trials (which includes development of a Shared Decision Making Tool). Learn more.
- Changing the World with Your Knee - our collaboration with researchers on the OMERACT Synovial Tissue group where we facilitate focus groups with patients to learn what they need to understand about these studies, which include participating in voluntary knee biopsies, in order to want to be part of the study. Learn more.
Pull up a seat - it's your turn at the table!
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis).
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).
Donate Today! Thank you for your continued support of this show. If you would like to give to our cause, so all patients globally always have a seat "at the table", your gift would be appreciated. Give today!
Sunday Jul 26, 2020
Sunday Jul 26, 2020
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Sunday Jul 19, 2020
Sunday Jul 19, 2020
Learn more about AiArthritis Voices online site at https://aiarthritisvoices.org.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Sunday Jul 12, 2020
Sunday Jul 12, 2020
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Sunday Jul 05, 2020
Sunday Jul 05, 2020
While we asked Ms. Durazo if we could keep this resource for you to help navigate your challenges with invisible disease, she declined, stating the contract to use the Angela Durazo brand was only agreed upon for a one year term.
You can find several other invisible disease episodes and associated conversations to join! We have connected this show space with a previous episode on invisible disease.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Sunday Jun 28, 2020
Sunday Jun 28, 2020
Welcome to AiArthritis Voices 360 - the talk show hosted by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), whose mission is to help others, like us, living with AiArthritis diseases, have a voice "at the table" alongside other stakeholders as equals, to solve problems that impact education, advocacy, and research.
This week Tiffany, Deb, and Patrice are learning while having a great time as they have been "at EULAR 2020", which was supposed to take place in Germany June 3-6, but is now ONLINE - through September 1st. In this debrief, which is the third of four, cover the following:
- Award-winning abstracts - focus on working with rheumatic diseases, gut health. We talk in detail about our opinions as patients and focus on some specific projects at AiArthritis related to this topic.
- Patient issues with adherences to treatments: fears, side effects, pregnancy, age - interesting research! We delve more into pregnancy and age in particular - especially regarding current research that moms can be on biologics during pregnancy and the difference in those with long term disease and early on refusing to start treatments.
- Cardiovascular: It's not just RA, research for PsA, Axial Spondyloarthritis and others. These diseases ARE full body! Make sure you remember to take care of the whole body.
- EULAR 2020 Recommendations: New RA and PsA treatment guidelines, involving young people in voicing personal therapeutic outcomes interest (i.e. school, work, relationships, socializing), personalized vs precision medicine, shared-decision making, and patient concerns to address for injection therapy (steroid shots, etc).
The team will take all the information they are learning this month and open the conversation up to YOU in July. Want to "go with us" to EULAR in July? Sign up to learn more HERE.
About Us. To learn more about our nonprofit, please visit www.aiarthritis.org.
Donate. Want to give us a High Five, or two? Your support is vital to helping us continue our work to improve the lives of people living with AiArthritis diseases. Your generosity is appreciated! GIVE TODAY
Related Talk Show episodes:
- Synovial Tissue project: Episode 9
- Precision Medicine vs Personalized Medicine: Mini-Episode 9
- Special Series - COVID-19 & AiArthritis: https://www.aiarthritis.org/covid19
- Episode on pregnancy & research with Mariah Leach from Mama's Facing Forward & Linette Dyer from Mother to Baby: Episode 11
- Shared Decision Making and Precision Medicine: Mini-Episode 15
Related Projects:
- Our Accumulator/Working with lack of biologics project: https://www.aiarthritis.org/accumulator
- Our Preparing Patients for Precision Medicine education and research project GET INVOLVED: https://www.aiarthritis.org/precision...
Want to watch the raw footage of our team recording this episode? Visit: https://youtu.be/ypw5kAW3AyU While there you can view the first two debriefs and learn more how YOU can attend conferences "with us".
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).