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AiArthitis Voices 360 is produced by the International Foundation for Autoimmune & Autoinflammatory Arthritis. On Sunday, join Tiffany and her 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.

AiArthritis Voices 360 Podcast International Foundation for Autoimmune & Autoinflammatory Arthritis

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AiArthitis Voices 360 is produced by the International Foundation for Autoimmune & Autoinflammatory Arthritis. On Sunday, join Tiffany and her 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.

    Episode 53: FDA Public Meeting Opportunity - Patients "at the table"

    Episode 53: FDA Public Meeting Opportunity - Patients "at the table"

    This week join your patient co-host Danielle Dass as she reports back on her experience attending an American Food and Drug Administration (FDA) Public Meeting on behalf of the International Foundation for Autoimmune and Autoinflammatory Arthritis. The meeting was intended to gather information from patients, medical professionals, and industry personnel about the accessibility and utility of safety communications regarding medical devices to better inform FDA practices.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 patient community. This means sometimes we send representatives to participate in events hosted by regulatory agencies like the FDA or the European Medicines Agency (EMA). In this episode, Danielle will explain how you can get involved in this meeting and how you can participate in future opportunities.After listening to the episode, if you would like to view the FDA safety Communications about medical devices or any other products, you can do so here: FDA Safety CommunicationsIf you would like to leave feedback or comment on the safety communications linked above or any of the issues from the meeting discussed in the episode, please visit FDA Public Comment by January 19, 2021.Now, 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 Danielle 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.  JOIN TODAY! 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, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.    Show Notes: Episode 53 – “FDA Public Meeting Opportunity - Patients "at the table” 00:53 - Danielle welcomes listeners01:05 - Danielle is a patient living with Rheumatoid Arthritis and Axial Spondyloarthritis01:34 - Today’s episode is about Danielle’s experience participating as a panelist in a public meeting for the American Food and Drug Administration (FDA) about safety communications regarding medical devices02:08 - AiArthritis seeks to center the patient voice in all conversations in the medical community that impact patients living with AiArthritis Diseases02:21 - AiArthritis patients often use both implanted and assistive medical devices03:39 - AiArthritis will use AiArthritis Voices to put stakeholders in touch with volunteers who are interested in participating in things like conferences, public meetings, and other events05:34 - Danielle talks about the experience of participating as an equal stakeholder and encourages other patients to get involved09:03 - AiArthritis was the only organization that sent a representative to speak for adult patients at the FDA meeting09:18 - Danielle explains the purpose of the meeting and what types of information the FDA is seeking12:23 - The FDA is particularly interested in getting safety information communicated to people who do not have access to the internet, but they did not invite anyone to the panel who could speak to that13:23 - Danielle explains how listeners can submit comments that will be read by the FDA about safety communications15:32 - 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 us15:57 - Daniel

    • 17 Min.
    Episode 52: An Unprecedented Year in Review

    Episode 52: An Unprecedented Year in Review

    This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for Autoimmune and Autoinflammatory Arthritis, as she gives our annual “Year End Review” reflection. In honor of this unprecedented year, this episode will not be the usual briefing on the annual accomplishments of the organization. That information is still available on our website at www.aiarthritis.org, and we will be publishing an annual report very soon.The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We seek to improve communication, research, and education and ensure access to the best treatments possible by listening to all voices and perspectives. If 2020 has taught us anything, it should be that everyone can be facing the same set of conditions and have different needs and perspectives based on their lived experiences. We thank you for your support of the show and the organization and look forward to hearing your perspectives in the future.Now, 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 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.  JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on Twitter, Instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.    Show Notes: Episode 52 – “Unprecedented Year in Review” 00:52 - Tiffany welcomes listeners01:12 - Today’s episode is a year end review for this unprecedented year03:05 - Some things that are very common in our lives right now like masks and zoom happy hours were unheard of just a year ago04:36 - Many people feel like others don’t understand their experience during the pandemic05:39 - Tensions run high from the prolonged stress, economic strain, etc.06:43 - AiArthritis will be putting out an annual report on our 2020 activities for those that want a detailed accounting of our organizational year in review08:25 - AiArthritis patients struggles to connect with friends due to fatigue and pain, so normalizing zoom for socializing is a positive step for our community08:45 - Hopefully the experience of the pandemic will allow others to understand what AiArthritis patients experience as part of their normal lives09:40 - AiArthritis is focused on improving communication, research, and education and ensuring access to the best treatments possible by listening to all voices10:05 - Tiffany thanks listeners for their support during this unprecedented year

    • 11 Min.
    Episode 51: Oh Mama! Special Series Episode 2 - Breastfeeding with AiArthritis Diseases

    Episode 51: Oh Mama! Special Series Episode 2 - Breastfeeding with AiArthritis Diseases

    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!Now, 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 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.  JOIN TODAY!  AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.    Show Notes: Episode 51 – “Oh Mama!” 00:52 - Danielle welcomes listeners01:45 - Today’s episode is about breastfeeding with an AiArthritis Disease02:09 - This episode is a continuation of Episode 11, which was about pregnancy with an AiArthritis Disease02:23 - 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 period02:43 - Mariah and Cheryl introduce themselves03:04 - 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 illness04:18 - Cheryl is an Occupational Therapist and an RA patient who founded Arthritis Life to help arthritis patients navigate their daily lives06:53 - Breastfeeding is one of the most common postpartum issues new moms want to discuss07:14 - 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 baby08:37 - Breastfeeding isn’t always the best choice for a new mom, especially one living with a chronic illness08:59 - 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 milk10:39 - Breast is best in a vacuum, but no mother lives in a vacuum12:36 - Currently there are many treatment options for AiArthritis patients that are safe to use whil

    • 32 Min.
    Episode 50: Grit, Gratitude and Grace: A positive mindset can improve pain and resilience

    Episode 50: Grit, Gratitude and Grace: A positive mindset can improve pain and resilience

    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!Now, 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 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. JOIN TODAY!  AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.    Show Notes: Episode 50 – “Grit, Gratitude, and Grace” 00:52 - Tiffany welcomes listeners01:37 - Tiffany is joined today by Deb and Patrice, who attended the virtual American College of Rheumatology Conference with Tiffany02:49 - Patients are increasingly demanding a “whole body approach” to treating AiArthritis Diseases which may include non-pharmacologic therapies03:31 - One of the sessions at ACR discussed the effect of positive mindset on disease and pain management06:38 - The speaker focused heavily on how individuals respond to adversity and why some people are more resilient than others06:59 - When you experience adversity, what happens inside your body?07:28 - People who are more resilient (ie have grit) tend to experience less pain08:23 - People with military training tend to have strong resilience, so researchers studied grit in cadets by inducing pain in healthy subjects09:13 - The cadets with the most positive attitudes had higher pain thresholds and more resilience to pain09:40 - Other research has shown that depression and anxiety can trigger inflammatory responses and pain in subjects11:30 - People with a fixed mindset (as opposed to a growth mindset) are more likely to feel depressed and have higher levels of pain12:24 - 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

    • 25 Min.
    Episode 49: Your disease, my disease, Still's disease - what are doctors learning to expedite diagnosis?

    Episode 49: Your disease, my disease, Still's disease - what are doctors learning to expedite diagnosis?

    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.  JOIN TODAY! 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. AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.    Show Notes: Episode 49  00:53 - Tiffany welcomes listeners01:42 - Tiffany is joined today by Deb and Patrice03:02 - 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 ACR06:36 - 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 Disease09:03 - 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 Arthritis09:45 - Stills Disease is the new umbrella term that encompasses AOSD and SJIA12:39 - Stills Disease is rare and has historically been a difficult condition to diagnose13:24 - 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 Disease14:20 - The pathology of the way the disease presents is largely the same regardless of the age of the patient17:58 - Stills Disease is an autoinflammatory disease, which means there is no known trigger to the onset of the disease and results in more systemic symptoms20:30 - 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 activity23:58 - 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 effectively29:13 - Most juvenile Stills Disease patients have onset before age 5

    • 46 Min.
    Episode 48: Support: It's not so simple. Diverse needs for difference experiences.

    Episode 48: Support: It's not so simple. Diverse needs for difference experiences.

    Join Patrice, Effie, and Rick as they share their experiences with support - which all differ per personal relationships and perspectives. That means there are different needs that we must address to help everyone.  Patrice has no support from her spouse, Rick has tremendous support from his, and Effie weighs in on support needs from a single's point of view. They also talk about the needs of all others involved in our journey, as AiArthritis diseases impact every person in our lives. In turn, they too have support needs.  If you are a person living with AiArthritis diseases, what's your experience with support from the various people in your life? What could be improved? What works well?   Are you part of a patient's inner circle (significant other, child, parent, family member, friend, etc.)? If so, what are YOUR support needs?  What would you like to learn about supporting the person you know living with AiArthritis diseases? It's time for YOU to pull up a seat "at the table" and join the conversation! Because only together can we hear all the perspectives and experiences that are required to develop solutions that matter to all. Patients and parents of juvenile patients: Sign up to join the AiArthritis Voices online community HERE. OR, if you are already a member, join Patrice, Effie, and Rick in the online community, AiArthritis Voices 360 space, to continue the conversation!Are you part of a patient's "inner circle"? Are you a family member, significant other, friend - and you want to share more about YOUR needs for support? Or would you like to learn more about how you can be supportive?  You can sign up to participate in an extended version of the AiArthritis Voices community HERE.  AiArthritis Voices 360 is produced by the International Foundation for Autoimmune & Autoinflammatory Arthritis. Visit us on the web at https://www.aiarthritis.org/talkshow  Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).  Show Notes: Episode 48 – “Support” 00:53 - Patrice welcomes listeners01:28 - Patrice is joined by Effie and Rick02:17 -  Today’s episode is about support networks02:43 - Patrice shares her story of living with AiArthritis without any support from her family03:31 - Patients with AiArthritis may not be able to divorce their spouse if they rely on them financially or for health insurance04:04 - The national divorce rate in the US is 40%, but it goes up to 75% when one spouse is chronically ill04:25 - Women diagnosed with chronic illness are 6x more likely to be divorced than a male patient05:00 - Patrice has built her own network of support among fellow patients since it wasn’t available from her family05:51 - Volunteering may also provide an opportunity for patients seeking emotional satisfaction 06:19 - Rick shares his support story of being married to a supportive spouse07:10 - For Rick, the point where he had to cease working was one of the most emotional times for he and his wife07:59 - Rick doesn’t believe he could live without his wife’s support09:19 - Effie shares her story of being a single individual in need of support for JIA/RA10:24 - Loved ones of patients also need support11:17 - AiArthritis diseases don’t just impact the person who has it, but also everyone around them11:33  - The co-hosts discuss the issue of demonstrating grace in relationships12:58 - Patients may feel they need to educate their children in particular since there may be genetic components to AiArthritis Diseases13:27 - Patients may be plagued by guilt or regrets and need to forgive themselves before they can show grace to others14:45 - Effie explains Spoon Theory16:27 - It’s important to forgive other people for not understanding what it is like to live with a chronic illness19:27 - Knowledge about autoimmune diseases - especially the fact that they aren

    • 28 Min.

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