AiArthritis Voices 360 Talk Show International Foundation for Autoimmune & Autoinflammatory Arthritis

In this episode, co-hosts Leila, Estela, and Kerry delve into the crucial topic of social wellness amidst living with AiArthritis disease. They explore the essence of social wellness, its significance and sharing personal insights on navigating social lives while managing health challenges. Join our co-hosts as they discuss both the supportive and challenging dynamics of maintaining an active social life with an AiArthritis disease and how online communities can positively impact social wellness. Drawing from community questions and experiences, they offer invaluable advice, practical tips, and thoughtful modifications to foster social fulfillment despite potential barriers. Tune in to learn how to prioritize social wellness in the face of chronic illness.

Episode Highlights: 
Definition and exploration of social wellness, emphasizing its importance in maintaining overall well-being.
How social wellness can negatively and positively affect your AiArthritis disease 
Discussion on the cohosts' personal experiences with their social lives and how they navigate social interactions while managing their health conditions.
Insights into the reactions of family and friends to the cohosts' social needs, highlighting both supportive and challenging aspects.
How you can utilize technology to connect to your community to positively impact your social life. 
Answering community questions and comments regarding social wellness by sharing practical advice, tips, and modifications for fostering social fulfillment despite potential barriers.
 
Donate to Support the Show: https://www.aiarthritis.org/donate 
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
 
Connect with our Co-Hosts:
 
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
 
Connect with Leila:
    Instagram: @lupus.lifestyle.lei
     TikTok: @lupus.lifestyle.lei
 
Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories. 
 
Connect with Kerry:
    Instagram: @buttahflyk 
    Twitter: @buttahflyk 
    Facebook: @floatlikeabuttahfly 
    Website: http://bit.ly/floatlikeabuttahfly
 
 
Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers. 
 
Connect with Estela: 
      Instagram: @estela_mata @looms4lupus
    LinkedIn: @Estela Mata-Carcamo
 
 
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 
 

Curious about how volunteering with AiArthritis could transform your life and the lives of others?
 
In the latest episode of AiArthritis Voices 360 Talk Show as co-hosts Leila, Michael, Jenni, Deeanne, Patrice, and Deb share heartfelt stories of their journey into volunteering with AiArthritis. From personal experiences to the profound impact AiArthritis has had on their lives as patients, they delve into the transformative power of community support. Discover why volunteering is vital and how the AiArthritis community has become a lifeline, offering understanding, empathy, and empowerment. 
 
Join the conversation and learn how you too can make a difference by getting involved with AiArthritis. Find out more here: https://www.aiarthritis.org/volunteer

Episode Highlights: 
Dive into the intriguing stories behind our volunteers' journey to AiArthritis.
Hear how AiArthritis has reshaped lives and inspired resilience in our volunteers.
Explore why volunteering is the key to driving progress for the AiArthritis organization and community.
Discover the profound support and empowerment found within the AiArthritis community.
Learn how you can make a difference and get involved with AiArthritis today.
 
Donate to Support the Show: https://www.aiarthritis.org/donate 
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
 
Connect with our Co-Hosts:
 
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
 
Connect with Leila:
    Instagram: @lupus.lifestyle.lei
     TikTok: @lupus.lifestyle.lei
 
Jen 
Connect with Jen: 
Podcast : My Spoonie Sisters
Instagram: @gracejully_jen
      @my_spoonie_sisters
 
 
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 
 

This is an AiArthritis Voices 360 REWIND, where we are bringing back the first RheumyRound episode from 2020 where we opened the conversation on improving doctor office visits! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.
 
Join us as our co-hosts, Tiffany and Kelly, and guests, Dr. Kim and Jerik Leung, explore the important dynamic between patients and doctors in healthcare communication. Through insightful dialogue and shared experiences from both the patient and physician perspective, we uncover strategies to enhance mutual understanding, empowering patients to articulate their needs and doctors to listen attentively. Together, we champion the importance of empathy and effective communication in achieving accurate diagnoses and personalized treatment plans for those navigating AiArthritis diseases.

Episode Highlights: 
Do patients and rheumatologists' goals and expectations during an office visit align? 
The significance of effective patient-doctor communication in managing AiArthritis diseases
Strategies for patients to articulate their concerns and needs during office visits
Techniques for doctors to actively listen and engage with patients to improve diagnostic accuracy
Shared experiences and insights from both patients and doctors on navigating communication challenges
How doctors can integrate social determinants of a patient's health in the clinical setting 

Related Episodes:
RheumyRounds: PART ONE The Good, The Bad, and The Ugly - Improving Office Visit Communication: https://www.aiarthritis.org/talkshow-ep80

RheumyRounds: PART TWO The Good, The Bad, & The Ugly - Improving Office Visit Communication : https://www.aiarthritis.org/talkshow-ep81

 
Donate to Support the Show: https://www.aiarthritis.org/donate 
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
 
Meet Our Host:
 
Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
 
Connect with Tiffany:
Facebook: @tiffanyAiArthritis
Twitter: @TiffWRobertson
LinkedIn: @TiffanyWestrichRobertson
 
Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate.  She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.
 
Connect with Kelly:
Blog: www.asmyjointsturn.com.
 
 
Meet our Guests: 
 
Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.
 
Connect with Dr. Al Kim
Instagram: @washulupusclinic
Twitter : @AlHKim
 
Jerik Leung doctoral student and Woodruff Fellow in the Behavioral, Social, and Health Education Sciences department at Emory University. His current research interests involve characterizing pathways linking structural social determinants of health with individual health outcomes in chronic disease. He is specifically interested in how structural factors sha

Welcome to AiArthritis Voices 360! In this episode, Leila, the Health Education Manager at AiArthritis, delves into the impact of AiArthritis diseases on reproductive health, sharing insights from the RNS and ACR 2023 conferences. Leila delves into the myriad challenges individuals encounter, including delayed puberty, heightened disease activity during menstrual cycles, and the heightened risks associated with unplanned pregnancies. Navigating the intricate landscape of family planning within the AiArthritis community, we discuss the significance of birth control methods and the impact of medications on fertility.
 
Drawing from personal experience with lupus, Leila discusses preserving fertility, assisted reproductive technologies, and navigating family planning. Join us on this episode to learn more about reproductive health with AiArthritis diseases and hear Leila’s personal experience with family planning! 
 
If you have questions or would like to share your own family planning story, please feel free to email Leila at Leila@AiArthritis.org.

Episode Highlights: 
Explore the latest research insights on how AiArthritis diseases affect reproduction from the RNS and ACR 2023 conferences.
Join Leila on a personal journey, navigating reproductive health with Lupus.
Uncover challenges in family planning, from medication impacts to the significance of birth control in AiArthritis.
Learn about medication effects on fertility and preservation strategies for those with AiArthritis.
 
Resources & Links:
https://mothertobaby.org/
http://lupuspregnancy.org/
https://www.mamasfacingforward.com/
https://www.graceandable.com/pages/chilliredcompressionglove
RNS Go With Us video about Lupus and Pregnancy: https://youtu.be/tgeIW0pxF8M?feature=shared
ACR Go With Us video about Reproductive Health: https://youtu.be/rYGs1fevQWU?feature=shared
 
Related Episodes:
Ep 11: Oh Mama! Pregnancy Planning with a Chronic Illness : https://www.aiarthritis.org/talkshow-ep11
Ep 51: Oh Mama! Physical and Emotional Support Postpartum : https://www.aiarthritis.org/talkshow-ep51
Ep 89: Surgery with an AiArthritis Disease : https://www.aiarthritis.org/talkshow-ep89 

Meet Our Host:
 
Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.
 
Connect with Leila:
    Instagram: @lupus.lifestyle.lei
     LinkedIn: www.linkedin.com/in/leila-lagandaon
      Facebook: @leilaaiarthritis
     TikTok: @lupus.lifestyle.lei
 
Donate to Support the Show: https://www.aiarthritis.org/donate 
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

This episode is a 360it revisiting the topics put on the table during Episode 88 : Biosimilars - Interchangeability & Switching 2023
 
Join us in this breakout 360it from Episode 88 Biosimilars : Interchangeability & Switching 2023 as we dissect the Inflation Reduction Act (IRA) and its potential fallout on patient access to diverse treatment plans. Tracing the historical trajectory of the IRA, we uncover its role in price negotiations and the concerning shift in investments away from critical drugs tailored for specific diseases. This reallocation poses a tangible threat to the availability and diversity of treatments, including for those living with AiArthritis diseases. As we dive into the landscape of healthcare policy, the discussion emphasizes the pressing need for IRA improvements to consider the long term well-being of patients. Without these crucial enhancements, we will have a future with not only fewer innovative treatments but potentially less treatment options available. 
 
Join us in fighting for improvements to the IRA and patient involvement in treatment access.
 
Episode Highlights : 
The history of Medicare Part D and its positive impact on healthcare
What is the Inflation Reduction Act
Why the IRA price negotiations are important to understand and how it will affect your treatment access 
How healthcare R&D will be negatively impacted by the IRA price negotiations 
Consequences to Patients of Drug Price-Setting Policies for patients
How can patients get involved in the IRA price negotiations 
How the IRA will disincentivize small molecule drugs and indications for treatment plans 
 
Resources Mentioned In This Episode:
AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars 
EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview
ASBM Statement on CMS drugs list announcement - https://safebiologics.org/medicare-price-negotiations-will-jeopardize-patient-access-to-new-medicines-result-in-worse-health-outcomes/
ASBM webinar on IRA - https://safebiologics.org/july-26-webinar-on-ira-medicare-price-negotiations/
An educational microsite for patients to learn more and read news articles -  www.IRAPatientInfo.org 
 
Meet Our Co-Hosts & Guests: 
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
Connect with Tiffany:
Facebook: @tiffanyAiArthritis
Twitter: @TiffWRobertson
LinkedIn: @TiffanyWestrichRobertson
 
Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.
 
Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly ser

Join us in this episode as co-hosts Tiffany and Deb share a recap of the 2023 ACR, American College of Rheumatology Conference and how these topics specifically affect AiArthritis diseases. Tiffany and Deb also share an insight into our program, “Go With Us!” to Conferences. The Go With Us program allows patients to attend these conferences in real time and get updates on different important or emerging topics for AiArthritis diseases.
 
In this episode, the co-hosts discuss some main conference topics, both pharma and non-pharma, such as how precision medicine can greatly benefit patients by matching correct treatment plans, how existing treatments are being retested for subgroups and how lifestyle can impact your treatment. Learn common questions doctors receive from patients about their day to day life such as exercise, stress and diet and their advice on how lifestyle modifications can also help to alleviate symptoms. Don’t miss this patient recap of the 2023 ACR conference! 
 
Resources & Links:
 
To join the Go With Us program, click here: https://www.aiarthritis.org/conferences
To learn how to volunteer with AiArthritis, check out our program here: https://www.aiarthritis.org/volunteer
Come be apart of the AiArthritis Research Database here: https://www.aiarthritis.org/database
To learn more about JIA project, click here: www.aiarthritis.org/JIAcommunication
Nutrition Resource for Patients : www.tiny.ucsf.edu/rheumnutrition

Episode Highlights: 
How lifestyle modifications such as exercise, stress and diet can help alleviate symptoms
Understanding what parts of your immune system is being triggered by your disease for matching to the best treatments 
Discussion on how early should early intervention be done for JIA 
The importance of understanding precision medicine to improve matching the correct treatment plan for your AiArthritis disease.
AiArthritis Go With Us program where you are able to attend the conferences such as ACR and EULAR in real time to understand current and emerging topics that relate to AiArthritis diseases. 
New therapy option in the very beginning stages being discussed at ACR that has the potential to suppress and protect from autoimmune arthritis diseases. 
Why supporting research is so important for the development of AiArthritis treatments

Meet Our Host:
 
Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.
 
Connect with Tiffany:
Facebook: @tiffanyAiArthritis
Twitter: @TiffWRobertson
LinkedIn: @TiffanyWestrichRobertson
 
Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.
Connect with Deb:
Facebook: @deb.majcherconstien 
Instagram: @debconstien
Twitter:  @debconstien
 
Donate to Support the Show: https://www.aiarthritis.org/donate 
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!