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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 01, 2019
Sunday Dec 01, 2019
Welcome to AiArthritis Voices 360.This episode join your host, Tiffany, and special guest Dr. Apostolos Kontzias from the Center of Autoinflammatory Diseases, as they discuss the distinction between these two sides of the immune system, and the diseases that stem from them. Inconclusive laboratory results, a shortage of experts in the field, and poor understanding of these conditions can cause diagnostic delays, leading to poor outcomes. This confusion also causes patients with adult onset diseases become a forgotten subgroup within the AiArthritis community.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 3 – “Autoimmune vs Autoinflammatory”
00:52 – Tiffany welcomes listeners
01:49 – This episode will explain autoimmune vs autoinflammatory arthritis
02:41 - “Auto” in both terms means immune mediated
03:13 - This will be an ongoing discussion beyond today’s episode
04:29 - Tiffany welcomes special guest, Dr. Apostolos Kontzias
05:24 - Dr. Kontzias’ credentials
07:40 - Dr. Kontzias explains the distinction between autoimmune and autoinflammatory, which both stem from the immune system, just different sides (“innate” vs “acquired”)
09:00 - Autoinflammatory patients usually lack laboratory markers for autoimmune disease - despite inflammatory symptoms - which can cause a diagnostic delay
09:23 - Both autoimmune patients and autoinflammatory patients can present with arthritis and other common features (fatigue, varying degrees of fevers)
10:16 - Autoinflammatory syndromes are innate (of unknown cause, from the primal part of the immune system) and thus can present early in life, but some do not present until adulthood
11:42 - Either type of immune response may be initially triggered by environmental factors, but also environmental factors can trigger disease activity
12:12 - Viral infections can trigger autoinflammatory syndromes
12:25 - Menstruation can trigger increases in symptoms for female patients for either type of disease
12:55 - Some conditions “bridge” the two types and can have features of both adaptive and innate immunity.
14:14 - By definition, patients with autoinflammatory conditions have an immune system that does not recognize the patient’s own structural components of their cells
15:17 - Fevers and rashes are often markers for autoinflammatory conditions. General markers for inflammation without laboratory results that support traditional autoimmune diagnoses are also predictive of autoinflammatory conditions
17:37 - Tiffany thanks Dr. Kontzias for his time
18:37 - IFAA working on designing informational brochure about Stills Disease based on patient input
19:28 - Patients report that there are differences between pediatric and adult Stills Disease even though scientifically they are the same
20:34 - Adults have extreme difficulty receiving accurate diagnosis for Stills Disease because the medical community only considers it as a plausible diagnosis for children
21:02 - IFAA wants to shine a light on those with adult onset autoinflammatory conditions because they are often a forgotten subgroup within our community
22:36 - Tiffany points out that there are so many patients who are told they do not have a problem because they do not have the positive lab results or biomarkers, including autoimmune (not specific to autoinflammatory, requires further discussion)
23:22 - Dr. Kontzias and IFAA want all medical professionals to listen to patients
24:13 - What else do you need to understand to help with your journey? Submit responses at www.aiarthritis.org/podcast
24:19 - If you are a medical professional, we want to hear your ideas on how we can help people understand these diseases better and lead to earlier detection or better disease management. Submit responses at www.aiarthritis.org/podcast
25:09 - Tiffany thanks listeners for tuning in to learn more about the difference between autoimmune and autoinflammatory diseases.
Wednesday Nov 27, 2019
Wednesday Nov 27, 2019
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she discusses the need to differentiate arthritis types to address misunderstandings that lead to relationship conflicts and early diagnosis, which can result in compromised quality of life and elevated costs to our healthcare systems. If you have ever felt like nobody understood your disease, or you want to help IFAA create educational materials for the public and practitioners to help stop the information, then this episode is for you.
Let’s start a conversation about educating patients, families, the medical community, and the public about the type of arthritis associated with having an autoimmune or autoinflammatory disease.
Visit us online to take your seat at the table and submit YOUR comments: www.aiarthritis.org/podcast
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Sunday Nov 24, 2019
Sunday Nov 24, 2019
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Deb Constien discuss the challenges faced by patients who experience atypical disease presentations, especially the need to advance our understanding of this phenomenon because the typical is not so typical. This concept is vital for early detection and improving outcomes. They also explore the ways that a lack of commonality among disease presentation and progression impact advancements in treatment options.
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).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 2 – “Typical vs Atypical”
01:04 – Welcome Co-Host Deb
01:24 – Typical is not so typical
02:39 – What does atypical mean?
03:06 – Why IFAA focuses on atypical presentation of disease
04:20 - Only 30-40% of patients respond to “typical” treatment protocols for their diagnosis
05:43 - Deb’s Story
13:39 - Atypical presentation can affect treatment options which impacts longterm prognosis
15:25 - Deb’s disease progression has slowed significantly and she is able to repair some of the previous damage
18:19 - Shortage of available rheumatologists makes atypical diagnoses even more challenging due to extended wait times
21:58 - Senior patients may have trouble getting a diagnosis because arthritis is automatically attributed to age
23:30 - Unavailability of MRIs can be another barrier to accurate and timely diagnosis
25:31 - Lack of insurance or lack of coverage with some insurance plans can limit patient access to treatment options
26:38 - Participating in clinical trials can give patients access to otherwise prohibitively expensive treatment options, but only if they fit the typical model for the diagnosis
32:24 - Invitation to visit AiArthritis.org/podcast and share your story with IFAA
33:15 - How should IFAA define typical and atypical? Visit the website to participate in the discussion.
34:25 - Tiffany thanks listeners for tuning in
Wednesday Nov 20, 2019
Wednesday Nov 20, 2019
Welcome to the first MINI-episode of AiArthritis Voices 360: "At The Table". These short shows focus on issues that we feel require immediate feedback, which is then applied directly to our projects or resources that go back to the community.
This episode, join your host Tiffany and IFAA volunteer and person diagnosed with Rheumatoid Arthritis, Deb. Deb is preparing for reconstructive surgery on her left foot and will have to face 10-12 weeks of recovery with absolutely no weight-bearing on the surgical foot. She does not feel hopping is an option, nor are crutches or a cane - because she has fused hands and wrists from being diagnosed 30 years ago (pre-modern practiced therapies).
Whether it’s surviving a flare or recovering from procedures, many of you have lived through these challenges and have good advice for others. We invite you to share your voice and expertise with our community.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Thursday Nov 07, 2019
Thursday Nov 07, 2019
Episode Description
Welcome to the first episode of AiArthritis Voice 360. This episode, join your host, Tiffany, as she introduces her mission at the International Foundation for Autoimmune and Autoinflammatory Arthritis, which is all about championing the voices of patients to solve the problems most affecting those diagnosed with AiArthritis diseases. This week she is joined by Kelly Conway, IFAA co-founder, to talk about their experience of being Mystery Patients and to share their diagnosis story. The route to diagnosis and treatment is often long and complicated.
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).
Be sure to check out our top-rated show on Feedspot!
Show Notes: Episode 1 – “Mystery Patient”
00:55 – Meet show host, Tiffany
01:10 – Tiffany's Diagnosis
01:45 – AiAVoices 360 Podcast Mission Statement
02:21 – Welcome Co-host Kelly
03:10 – History of Founding of International Foundation for Autoimmune &
Autoinflammatory Arthritis (IFAA)
03:34 – Tiffany's Mystery Patient Story
08:25 – How did Tiffany and Kelly Meet?
09:25 – IFAA begins as a Movement
11:52 – How a Movement Became a Foundation
13:20 – Kelly's Mystery Patient Story
26:55 – IFAA is a growing/evolving organization
30:00 – Plans for the Podcast moving forward (Weekly episode, breakouts, etc)
30:55 – Mystery Patients (no correlation between lab values and symptoms) and "must
be stress" assumption
32:45 – How will the podcast serve as a resource for patients
33:44 – Invitation to submit questions and comments by visiting
aiarthritis.org/podcast, especially Your Diagnosis Story
36:11 – Tiffany thanks listeners for tuning in
36:40 – Invitation to be co-host or guest on show by visiting aiarthritis.org/podcast
37:14 – Invitation to follow IFAA on social media
37:23 – Invitation to follow Kelly's blog "As My Joints Turn" at
https://asmyjointsturn.com/or on FB and Twitter
38:00 – Invitation to join other patients on AiArthritis Voices, a private forum for
patients only run by IFAA. (aiarthritisvoices.org) LAUNCHING SOON!
39:15 – Future plans: taking the podcast on the road!
40:20 – Invitation to support the podcast (details on aiarthritis.org/podcast and aiarthritis.org/VIP)
40:47 – Closing