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

In this episode, our co-hosts Estela and Juana delve deep into the often overlooked but critically important topic of mental health for those living with AiArthritis diseases. They discuss the significant impact these health challenges have on both the body and the mind, supported by eye-opening statistics that 52% of patients with autoimmune diseases are diagnosed with a mental health condition within a year. Tune in to hear Estela and Juana break down the science behind these connections, share their personal experiences and provide practical strategies to manage mental health while navigating life with AiArthritis diseases.
 
Episode Highlights: 
Defining AiArthritis diseases and their comprehensive impact on mental health
Discussion on the challenges of living with unpredictable flares
Juana's personal experience with rheumatoid arthritis and lupus and their impact on her mental health
Importance of self-care strategies such as rest, nutrition, exercise, and mindfulness techniques.
Benefits of therapy, counseling, and connecting with social support groups.
Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
Donate to Support the Show: https://www.aiarthritis.org/donate 
Follow AiArthritis on all social media platforms @IFAiArthritis
Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE
 
Connect with our Co-Hosts:
Estela is the President and co-founder of Looms for Lupus, a nonprofit providing advocacy and support for those affected by Lupus, Fibromyalgia, and mental health issues. With over 30 years in healthcare, she currently supports private practices with electronic medical records and office workflows. Estela co-founded Looms for Lupus in 2011 after her sister's near-fatal battle with Lupus and Immune Thrombocytopenia, channeling her passion into empowering and supporting the community. She collaborates with initiatives to increase diversity in clinical trials and advocates both locally and nationally.
 
Connect with Estela:
Facebook:@estelamata @looms4lupus
Instagram: @estela_mata @looms4lupus
Twitter: @estelamata @looms4lupus
LinkedIn: @Estela Mata-Carcamo
Website: www.looms4lupus.org
 
Juana is the co-founder of Looms for Lupus, a nonprofit supporting Lupus survivors, their families, and caregivers. Diagnosed with Rheumatoid Arthritis and Lupus in 2009, she facilitates bilingual support groups and advocates nationally for Lupus, Fibromyalgia, and Mental Health. Juana has served as a patient advisor, consumer advocate, and is a member of several advisory councils and task forces. Professionally, she is a Children's Social Worker for the Los Angeles Department of Children and Family Services.
 
Connect with Juana:
Facebook: Juana Mata
Instagram: @juany_mata
Twitter: @Matajuanamata
LinkedIn: Juana Mata
 
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! 

In this episode, Leila shares the exciting plans for the upcoming World AiArthritis Day on May 20th with AiArthritis. Delve into why raising awareness for AiArthritis diseases is crucial and discover ways you can actively participate on the global initiative. Through flashback segments, our co-hosts dissect the layers surrounding the term "arthritis," unraveling misunderstandings, family judgments, and the complexities of distinguishing AiArthritis from other conditions. Tune in for insightful discussions on diagnosis delays, access to treatments, fostering better health outcomes and how you can be a part of World AiArthritis Day! 

Episode Highlights: 
AiArthritis plans for World AiArthritis Day on May 20th
How listeners can actively engage in the global initiative
Common Misunderstandings of Arthritis 
Significance of raising awareness for AiArthritis diseases and the complexities of distinguishing AiArthritis from other conditions.
Patient insights into diagnosis delays and the effects on treatment plans.
 
Interested in getting involved?
https://www.aiarthritis.org/aiarthritisday
https://twitter.com/aiarthritisday
https://www.instagram.com/worldaiarthritisday
https://www.facebook.com/AiArthritisDay
Fundraiser: https://givebutter.com/AiArthritisWAiAD24
Race-a-Thon: https://www.facebook.com/events/1511735302713694/
 
Donate to Support the Show: https://www.aiarthritis.org/donate 
Follow AiArthritis on all social media platforms @IFAiArthritis
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
 
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!

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!