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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 Dec 13, 2020
Sunday Dec 13, 2020
This week join your patient co-hosts Danielle Dass, Mariah Leach, and Cheryl Crow as they bring an important topic from the American College of Rheumatology Annual Conference to our show - a session that Mariah and Cheryl led at the conference! This episode will be part of a series of planned episodes on postpartum challenges for new mothers living with AiArthritis Diseases. Today’s episode will focus on the emotional and physical challenges of breastfeeding.
Mariah Leach is the founder of Mama’s Facing Forward, a group dedicated to providing support and resources for pregnant women and mothers living with chronic illness. Cheryl Crow is an Occupational Therapist and the founder of Arthritis Life which seeks to provide daily living support for people living with AiArthritis Diseases. They will discuss the decision to breastfeed or formula-feed, resources for new mothers, safe treatment options while nursing, and ways to reduce pain and strain while nursing.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 51 – “Oh Mama!”
00:52 - Danielle welcomes listeners
01:45 - Today’s episode is about breastfeeding with an AiArthritis Disease
02:09 - This episode is a continuation of Episode 11, which was about pregnancy with an AiArthritis Disease
02:23 - Danielle is joined today by Mariah Leach and Cheryl Crow who presented a session at the American College of Rheumatology Conference on supporting new mothers during the postpartum period
02:43 - Mariah and Cheryl introduce themselves
03:04 - Mariah had nowhere to go for support when she struggled as an RA patient in the postpartum period so she founded Mama’s Facing Forward, a Facebook group and website that focuses on pregnancy and parenting with chronic illness
04:18 - Cheryl is an Occupational Therapist and an RA patient who founded Arthritis Life to help arthritis patients navigate their daily lives
06:53 - Breastfeeding is one of the most common postpartum issues new moms want to discuss
07:14 - The decision of whether or not to breastfeed should be a personal one, but many new moms feel a lot of pressure from others to nurse their new baby
08:37 - Breastfeeding isn’t always the best choice for a new mom, especially one living with a chronic illness
08:59 - Fed is best. Choosing not to breastfeed is a valid option for any mom.
10:00 - The Fed Is Best Foundation is an excellent source for information about all feeding options, including breastfeeding, formula-feeding, and even using donor milk
10:39 - Breast is best in a vacuum, but no mother lives in a vacuum
12:36 - Currently there are many treatment options for AiArthritis patients that are safe to use while breastfeeding
13:56 - Women should never have to choose between medicating their AiArthritis disease and breastfeeding
14:13 - Moms who need to take medication while pregnant or breastfeeding should consult Mother To Baby (mothertobaby.org), a website-based resource that collects information to help moms make informed choices
15:15 - If you are experiencing difficulty while performing your activities of daily living (feeding, dressing, changing, or caring for your baby), an occupational therapist can help you find strategies for dealing with both emotional and physical challenges
16:12 - You may have to ask your doctor for a referral since not all doctors know that they can send patients to an OT for help with postpartum issues
17:24 - To reduce pain while breastfeeding, consider the ergonomics of your positioning as well as how you’re holding the baby
18:20 - Having an accountability partner in the home to help remind you to use healthy posture while nursing can be helpful to reduce strain and repetitive stress injuries
20:32 - If you will be bottle-feeding your baby, try to choose a bottle that is easy for you to open and close
20:50 - Moms who will be pumping may benefit from a handsfree breast pumping bra so they don’t have to hold the bottles for extended periods of time
21:13 - Try to choose clothing that is conducive to breastfeeding but does not stress your hands with the closures
22:50 - A breastfeeding pillow can be helpful for supporting ergonomic positioning while nursing, as well as reducing the need to support the baby’s weight while nursing
23:59 - Alternate positions like side-lying or the football hold can also be helpful if holding the baby in the traditional nursing fashion is causing pain for Mom
25:20 - If a position doesn’t work for you, it may be worth revisiting later because your preferences may change as the baby develops or even with a subsequent child
26:33 - If you want more information about this occupational therapy for AiArthritis patients, you can check out Cheryl’s website @ myarthritislife.net or find Cheryl on ticktock (@arthritislife)
27:20 - Mariah invites listeners with chronic illness to join Mamas Facing Forward on Facebook or find her on instagram and twitter (@mamasforward)
28:05 - Mariah and Cheryl will be back for more episodes on this topic soon
29:08 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org or visit aiarthritis.org/aiarthritisvoices to continue this conversation with us
30:05 - Danielle invites listeners to connect with us on all social media platforms @ IFAiArthritis or email us @ podcast@aiarthritis.org
30:17 - Danielle thanks Mariah and Cheryl for co-hosting today’s episode
30:37 - Please consider supporting the show by donating at aiarthritis.org/talkshow
The session from the American College of Rheumatology (ACR) 2020 led by Mariah and Cheryl is called Reproductive Health: Meet Women's Needs. Description: Addressing reproductive health needs is an emergent priority for the rheumatology community. New research provides guidelines for how to safely treat and counsel rheumatology patients about reproductive health. Still, women with rheumatic disease lack needed health information to make evidence-informed decisions about family planning. This panel session will outline the unique needs during the stages of pre-pregnancy, pregnancy and early motherhood of reproductive-aged women diagnosed with rheumatic disease.
Sunday Nov 29, 2020
Sunday Nov 29, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constein, and Patrice Johnson as they take us back stage at the American College of Rheumatology Annual Conference. This episode will focus on a session from ACR titled “Grit, Gratitude, and Grace” about the impact that positive psychology can have on disease and pain management for AiArthritis patients.
Researchers induced pain in healthy adult military cadets to study the relationship between mindset and pain perception. They found that subjects with more positive attitudes, resilience to adversity, and growth mindsets reported lower pain levels than those who did not share those traits. Scientists have also discovered a link between pain and mental health. Depression and anxiety can even trigger an inflammatory response and the corresponding pain in some people. But patients know that just telling someone to have a positive attitude does not help them, so Tiffany, Deb, and Patrice will dig into the specific ways that you can harness grit, gratitude, and grace to feel happier and experience less pain.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis Voices - our online platform designed to deepen these conversations - allows all patients and parents of juvenile patients to attend conferences like ACR through our innovative new Learn and Connect section. So come join us to continue this and other conversations!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 50 – “Grit, Gratitude, and Grace”
00:52 - Tiffany welcomes listeners
01:37 - Tiffany is joined today by Deb and Patrice, who attended the virtual American College of Rheumatology Conference with Tiffany
02:49 - Patients are increasingly demanding a “whole body approach” to treating AiArthritis Diseases which may include non-pharmacologic therapies
03:31 - One of the sessions at ACR discussed the effect of positive mindset on disease and pain management
06:38 - The speaker focused heavily on how individuals respond to adversity and why some people are more resilient than others
06:59 - When you experience adversity, what happens inside your body?
07:28 - People who are more resilient (ie have grit) tend to experience less pain
08:23 - People with military training tend to have strong resilience, so researchers studied grit in cadets by inducing pain in healthy subjects
09:13 - The cadets with the most positive attitudes had higher pain thresholds and more resilience to pain
09:40 - Other research has shown that depression and anxiety can trigger inflammatory responses and pain in subjects
11:30 - People with a fixed mindset (as opposed to a growth mindset) are more likely to feel depressed and have higher levels of pain
12:24 - There are two types of gratitude: worldly (where you are thankful for specific things) and spiritual (where you are thankful to a higher power for all you have)
13:09 - Keeping a 30 Day Gratitude Journal can help people experience less turmoil, less anxiety, and less pain
14:16 - Deb is thankful in some ways for her disease because it has connected her to so many people and experiences that are very rewarding
15:19 - Grace is a feeling beyond simple thankfulness where you identify a direction and purpose in life
16:35 - People who feel like they have a purpose in life reportedly experience less anxiety, less depression, and better sleep
19:00 - Tiffany, Deb, and Patrice share their self-identified character strengths
22:28 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this and continue this conversation with us
23:26 - Tiffany invites listeners to get involved in any of our projects by visiting us on the web at aiarthritis.org
23:40 - Please consider supporting the show by donating at aiarthritis.org/talkshow
23:54 - Tiffany thanks listeners for their support as AiArthritis Voices 360 celebrates our first Anniversary as a talkshow
Sunday Nov 15, 2020
Sunday Nov 15, 2020
Special Series: American College of Rheumatology (ACR) Scientific Meeting 2020, "Go with Us!" to Conferences program
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, and Patrice Johnson as they take us backstage at the American College of Rheumatology Annual Conference. Tiffany and Deb attended two sessions at the conference on Stills Disease, and they brief Patrice and the rest of us on what they learned. Regardless which "auto" disease you have, this conversation is important, as it provides an insider view of what is being taught to doctors to help them expedite diagnosis.
One of the most important take-away messages from the ACR sessions is that doctors need to hear patient stories (or Case Studies) to improve their understanding of our diseases - especially when they are rare, like Still's, or in cases where presentation mimics other conditions.
Join us as we continue attending conferences, like the ACR, in our AiArthritis Voices online community - "Go with Us!" to Conferences program. It's your turn to pull up a seat! Join Tiffany and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect.
Living with Still's disease? If you are a patient living with Stills or the parent of a juvenile living with Stills, AiArthritis wants to hear from you! Visit our Stills Disease Awareness project at aiarthritis.org/mystills where you can submit your Stills Disease story. There you will also find patient-reported Still's brochures and educational materials for download.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 49
00:53 - Tiffany welcomes listeners
01:42 - Tiffany is joined today by Deb and Patrice
03:02 - AiArthritis Voices Online Community members can “go with us” to conferences, including the American College of Rheumatology (ACR)
04:17 - If you are a person living with an AiArthritis disease, register at aiarthritisvoices.org to join the co-hosts behind the scenes at the ACR
06:36 - The Learn and Connect Section on aiarthritisvoices.org will give you access to a variety of topics covered at ACR
07:11 - Today’s episode will cover a topic from 2 sessions at ACR on Stills Disease
09:03 - Patients diagnosed after age 16 are said to have Adult Onset Stills Disease (AOSD), while patients diagnosed before age 16 receive a diagnosis of Systemic Juvenile Idiopathic Arthritis
09:45 - Stills Disease is the new umbrella term that encompasses AOSD and SJIA
12:39 - Stills Disease is rare and has historically been a difficult condition to diagnose
13:24 - Patients may be diagnosed with AOSD but recall having symptoms as a child, which complicated the diagnosis before the medical community adopted the umbrella terms of Stills Disease
14:20 - The pathology of the way the disease presents is largely the same regardless of the age of the patient
17:58 - Stills Disease is an autoinflammatory disease, which means there is no known trigger to the onset of the disease and results in more systemic symptoms
20:30 - Many Stills patients do not like being associated with the term “arthritis” because as many as 25% of them do not present with any arthritic activity
23:58 - For more information about Stills Disease, you can visit aiarthritis.org/mystills
25:02 - The ACR presenter recommended that patients and parents of juvenile patients keep a journal of symptoms to help doctors diagnose a problem effectively
29:13 - Most juvenile Stills Disease patients have onset before age 5
29:33 - Children that young do not have the communication skills to convey their symptoms, making journaling by the parents so critical due diagnosis
31:03 - Shared decision-making between doctors and patients is critical to satisfactory care
33:25 - Research has shown that active and uncontrolled autoinflammatory disease can act as a trigger for the adapted side of the immune system
35:00 - Stills Disease is a diagnosis of exclusion, meaning it can only be applied to a patient if autoimmune diseases have been eliminated as possibilities
38:26 - If you are a person living with Stills Disease or the parent of a juvenile Stills patient, we want you to share your story at aiarthritis.org/mystills
43:34 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this with us
44:31 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web at aiarthritis.org/talkshow or all social media platforms @IFAiArthritis
45:03 - Please consider supporting the show by donating at aiarthritis.org/talkshow
Sunday Nov 01, 2020
Sunday Nov 01, 2020
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 48 – “Support”
00:53 - Patrice welcomes listeners
01:28 - Patrice is joined by Effie and Rick
02:17 - Today’s episode is about support networks
02:43 - Patrice shares her story of living with AiArthritis without any support from her family
03:31 - Patients with AiArthritis may not be able to divorce their spouse if they rely on them financially or for health insurance
04:04 - The national divorce rate in the US is 40%, but it goes up to 75% when one spouse is chronically ill
04:25 - Women diagnosed with chronic illness are 6x more likely to be divorced than a male patient
05:00 - Patrice has built her own network of support among fellow patients since it wasn’t available from her family
05:51 - Volunteering may also provide an opportunity for patients seeking emotional satisfaction
06:19 - Rick shares his support story of being married to a supportive spouse
07:10 - For Rick, the point where he had to cease working was one of the most emotional times for he and his wife
07:59 - Rick doesn’t believe he could live without his wife’s support
09:19 - Effie shares her story of being a single individual in need of support for JIA/RA
10:24 - Loved ones of patients also need support
11:17 - AiArthritis diseases don’t just impact the person who has it, but also everyone around them
11:33 - The co-hosts discuss the issue of demonstrating grace in relationships
12:58 - Patients may feel they need to educate their children in particular since there may be genetic components to AiArthritis Diseases
13:27 - Patients may be plagued by guilt or regrets and need to forgive themselves before they can show grace to others
14:45 - Effie explains Spoon Theory
16:27 - It’s important to forgive other people for not understanding what it is like to live with a chronic illness
19:27 - Knowledge about autoimmune diseases - especially the fact that they aren’t a result of poor choices - is much more available now than it was in previous decades
20:33 - Older generations may be less likely to share about their diagnosis or ask for or offer support
22:36 - An AiArthritis diagnosis doesn’t necessarily define an individual
23:05 - It might be helpful for future generations of a family if a patient keeps a journal of their diagnosis and treatment journey so that this information and knowledge from experience isn’t lost
25:29 - Patrice thanks Effie and Rick for joining in the conversation today
25:43 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
26:15 - Patrice thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
26:38 - Find Rick at RADiabetes.com or on Twitter (@LawrPhil) or on Facebook
26:51 - Find Effie at RisingAboveRA.com or on Twitter and Instagram @RisingAboveRA
27:29 - Please consider supporting the show by donating @ aiarthritis.org/podcast
Sunday Oct 18, 2020
Sunday Oct 18, 2020
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, for a special AiArthritis Watch Party for the announcement of the winners of the 9th Annual WEGO Health Awards. The WEGO Health Awards were created to embody the mission of WEGO Health: to empower patient leaders by recognizing their contributions to the field of healthcare. There are 16 categories of awards that this year included over 13000 nominees and 96 finalists.
AiArthritis is thrilled to announce that we won the 2020 WEGO Health Award for Best Team Performance! We are so grateful to all of our volunteers, staff, and supporters for making this award and all of our work possible. Our mission at AiArthritis is to center the patient voice in ongoing conversations about the issues facing the AiArthritis community and to bring as many voices to the table for those conversations as we can. Whether you have been with us from the beginning or are listening to AiArthritis Voices 360 for the first time, we want you to be a member of our family because only together can we move mountains and shape the future of AiArthritis patient health.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 47 – “Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020”
00:53 - Tiffany welcomes listeners
01:05 - AiArthritis was co-founded by Tiffany in 2011, after she started an awareness campaign to let people know that Arthritis is not just a disease for elderly people.
02:59 - We are a family, and all of our volunteers are members of that family.
04:03 - AiArthritis was 1 of 13000 nominations and 96 finalists for the WEGO Health Awards this year.
05:40 - Hear the reaction when our volunteers found out we won the WEGO Health Award for Best Team Performance.
14:51 - Tune in at AiArthritis.org/talkshow to listen to any of our previous episodes or subscribe wherever you listen to podcasts
Sunday Oct 04, 2020
Sunday Oct 04, 2020
This week join us for an AiArthritis Voices 360 first! In honor of World Arthritis Day on October 12, 2020, seven of your recurring Voices 360 co-hosts come together for an essential conversation about educating the public and the medical community about the many different types of arthritis that exist, especially the key differences between Osteoarthritis and AiArthritis. Thank you to Tiffany Westrich-Robertson, Deb Constien, Rick Phillips, Effie Koliopoulos, Patrice Johnson, Suz Schrandt, and Judy Flanagan for participating in this important round table discussion.
Our organization was enlisted in 2012 by EULAR to help bring more attention on World Arthritis Day to the autoimmune/autoinflammatory diseases that also included arthritis, as they felt the day was heavily focused on OA. Since then, we have tried to make sure on World Arthritis Day to really focus on the AUTO + Arthritis so our community is heard.
Join the co-hosts as they dig into misconceptions about arthritis, as well as how the lack of public awareness contributes to poorer quality of life for people living with AiArthritis diseases.
- What do you think of when you hear the word "arthritis"?
- How have misconceptions negatively impacted your life?
- Some push for eliminating the word arthritis from the names of certain diseases, in the hopes that the misunderstandings can be eliminated - but is that realistic? Oh, yes, we go there.
We are putting this conversation on the table so you can join us inside our new and improved AiArthritis Voices online community - starting October 12th, World Arthritis Day - to continue the discussion. Then, together, we can increase educational efforts to combat this issue and bring more understanding to arthritis types.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 46 – “The A Word”
00:53 - Tiffany welcomes listeners
01:20 - Tiffany introduces her panel of patient co-hosts - including Deb, Rick, Effie, Patrice, Suz, and Judy
03:18 - Today’s episode will address the issue of differentiating arthritis types and the loaded nature of “The A Word”
04:00 - The panelists discuss the frustrations AiArthritis patients have because the word “arthritis” is usually associated with elderly people, but most AiArthritis patients have onset when they are young
05:35 - Patients may avoid the word “arthritis” when discussing their medical issues with people because so many people have mistaken assumptions about the word
08:44 - Other patients may be careful to say “Autoimmune Arthritis” to discourage people from thinking about traditional Osteoarthritis
10:46 - Due to poor understanding of the word “arthritis,” doctors may dismiss symptoms in young people or systemic symptoms of rheumatological disease that aren’t related to joint damage
15:17 - Suz discusses the importance of early diagnosis and treatment
18:37 - Treatment for Autoimmune Arthritis diseases usually focuses on preventing joint damage, but often the other systemic symptoms are ignored completely
25:09 - Patients may feel frustrated when they have to explain the difference between osteoarthritis and autoimmune arthritis to others
25:44 - Sometimes people are reluctant to see a Rheumatologist and will only discuss their symptoms with their Primary Care Physician, who may not be able to determine if joint pain is AiArthritis or Osteoarthritis
29:05 - The Stills Disease Community has recently tried to move away from the term “arthritis” due to frustrations around inability to get accurate medical care
31:11 - There are actually over 100 different types of Arthritis, but the majority of people only understand Osteoarthritis and aren’t even aware there are other kinds
32:31 - The public seems to have a better understanding of complex features of other diseases (like diabetes and asthma) than they do about arthritis
34:42 - The Diabetes and Medical communities have spent 20+ years educating people on the complex features of Diabetes to improve patient outcomes
35:58 - Because most people will experience Osteoarthritis at some point in their lives, it is the type of arthritis that is always going to be better understood than others
38:26 - The Lupus Community does not wish to be associated with the term Arthritis, even though Autoimmune Arthritis is a clinical component of their disease
40:09 - Sometimes people fail to understand the seriousness of AiArthritis because they believe patients never die from those diseases
41:24 - The 2020 EULAR conference had many seminars on the systemic nature of AiArthritis diseases because they cause more than just joint damage
42:49 - Many patients wanted the name of their disease changed to distinguish it from arthritis which requires a united global effort of all stakeholders
44:15 - In addition to issues with coding and research, rebranding diseases by name would consume a lot of resources that could be used for research or development of new medications
49:58 - Poor understanding of AiArthritis diseases by the public and medical community takes an emotional toll on patients who feel misunderstood and unsupported
52:36 - The invisible nature of AiArthritis diseases can also cause emotional and physical distress to patients as society places unreasonable expectations on them
54:12 - People are so uncomfortable talking about disease and death that they may inadvertently blurt out unsupportive commentary in a misguided attempt to lift someone’s spirits
59:47 - Join all of AiArthritis Voices 360 co-hosts to discuss this and other topics by visiting aiarthritis.org/aiarthritisvoices to join our new online platform which will be premiering on World Arthritis Day, October 12, 2020
Sunday Sep 20, 2020
Sunday Sep 20, 2020
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 45 – “For All The Marbles”
00:53 - Tiffany welcomes listeners
02:36 - Today’s topic is an open invitation to all stakeholders in the AiArthritis community to get involved with our mission of trying to solve the most pressing issues impacting disease management and the journey of patients
04:15 - We want all the people involved in this community - not just the patients - to come to the table and help us address the issues our organization is trying to tackle
05:19 - Tiffany explains the AiArthritis logo and how it embodies the organization’s policy of bringing all voices to the table
09:46 - We need as many patient voices at the table for conversations as possible because Tiffany has not had the same experience with her disease that others may have had
11:28 - The organization and the Voices 360 show are evolving to bring more voices into the conversations
14:00 - On October 12, World Arthritis Day, the AiArthritis Voices online platform will open to all stakeholders. Previously it was only available for patients and parents of juvenile patients.
14:42 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
15:15 - All other stakeholders can also join the AiArthritis Voices Forum by visiting aiarthritis.org/aiarthritisvoices
15:41 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
Sunday Sep 13, 2020
Sunday Sep 13, 2020
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of the organization and the AiArthritis Voices 360 Talk Show.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis is proud to announce the impending publication of the first-ever 100% patient-reported symptoms brochure for Stills Disease, launching on September 7th 2020 - Stills Disease Awareness Day. This project could not have been possible without the participation of patients, like you, are willing to donate your time, expertise, and lived experiences.
This talk show was created to help bring more patient voices into the conversation about this and many other projects. We are very excited to transition to bimonthly episodes and incorporate the new AiArthritis Voices online platform to deepen these conversations and move more of our ongoing projects to their ultimate finish lines. We want YOU to join us at the table! Listen to this week’s episode to find out exactly how you can do that in this exciting new phase of the organization’s work.
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 44 – “Connecting the Dots”
00:53 - Tiffany welcomes listeners
01:15 - Today’s episode is about how patients sharing their experiences can begin to solve the issues facing the AiArthritis patient community
3:00 - Tiffany shares her diagnosis story
5:00 - Many patients research their symptoms online to try and solve the mystery of what is happening with their body
6:18 - Symptoms recognized by the medical community may not always be consistent with the lived experiences of patients
10:09 - AiArthritis conducted an Early Symptoms Study to identify common patient-reported symptoms of 6 AiArthritis Diseases
11:25 - AiArthritis has a unique process that seeks to solve problems thru ongoing patient conversations
12:57 - One of our projects has been to develop a Stills Disease Pamphlet thru a campaign called “My Stills”
16:06 - The first ever fully patient reported Stills Disease brochures including a comprehensive list of symptoms will be published on September 7, 2020 - Stills Disease Awareness Day
17:38 - AiArthritis plans to repeat this process for all the other AiArthritis patient communities we serve
19:11 - Voices 360 will transition to bimonthly episodes so that the organization can devote more development time to each episode to include as many stakeholders as possible and accomplish as many of our goals as possible
20:18 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritisvoices.org and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
20:38 - View all of our projects at aiarthritis.org
22:03 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
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