AiArthritis Voices 360 Talk Show
Education
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.
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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.
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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).
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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.
Episode 97 - World AiArthritis Day
Episode 96 - Social Wellness with an AiArthritis disease
Episode 95 - Volunteering with AiArthritis
Episode 94 Rheumy Rounds Rewind: Improving Doctor and Patient Communication During Office Visits
Episode 93: Reproductive Health and AiArthritis Diseases
#360it: Medicare Drug Price Negotiation: How Will it Affect Patient Access?
Episode 92 Breaking Research: Pharma & Non-Pharma 2023
Episode 91: AiArthritis Voices 360 REWIND - Distinction Between Autoimmune and Autoinflammatory diseases
Episode 90: Why Won’t They Diagnose Me?
Episode 89: Surgery with an AiArthritis Disease
Episode 88 Biosimilars - Interchangeability & Switching 2023
Episode 87: AiArthritis Rant Discussions - Inspired by Am I the @$$hole
Episode 86 : Organ Involvement: Disease Symptom or Comorbidity?
Episode 85: Elevator Pitches to Explain AiArthritis Diseases
Ep 84: I’m a Mystery Patient, Now What?
Episode 83: Improving Communication Throughout the JIA Journey
Episode 82: AUTO + Autoinflammatory Arthritis: Diagnosis, Please!
Episode 81 RheumyRounds: The Good, The Bad & The Ugly Pt. 2- Improving Office Visit Communication
Episode 80 RheumyRounds: The Good, the Bad and the Ugly - Improving Office Communication
Episode 79 : Patient Leadership In Research
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