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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
Wednesday Dec 18, 2019
Wednesday Dec 18, 2019
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she talks about trying to differentiate between flu and flare. Are you coming down with a virus? Or is your AiArthritis flaring? We want to start a conversation about how you manage your flares. How do you juggle work, family, and life when you feel terrible and look fine? Tiffany also invites listeners to visit www.aiarthritis.org/talk to get involved in IFAA’s annual Talk To Impact AiArthritis.
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 Dec 15, 2019
Sunday Dec 15, 2019
Welcome to AiArthritis Voices 360. This episode, your hosts Tiffany and Kaleb Michaud from FORWARD Databank, as they tune in from the American College of Rheumatology (ACR) meeting to discuss the importance of navigating your own health journey as a patient by having a voice in activities such as databanks and registries. FORWARD, and the associated projects mentioned, will not only help patients become more active in managing their own healthcare, the patient contributions will also benefit the advancement of science and the understanding of rheumatology.
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 5 – “Patient Registries with Kaleb Michaud”
00:52 – Tiffany welcomes listeners
1:20 – Co-host Kaleb Michaud introduces himself as an associate professor at the University of Nebraska Medial School and co-director of Forward, The National Databank for Rheumatic Diseases and as a patient with Juvenile Rheumatoid Arthritis
03:17 - Kaleb presented at the American Conference for Rheumatology about International Registries for Rheumatology
04:10 - Forward is a patient-driven registry based on detailed survey responses collected from patient participants
08:53 - The Forward wants you to participate, whether you are doing really well or really poorly or anything in between
09:43 - Registries monitor patient journeys to benefit scientific understanding of rheumatic diseases
10:41 - Kaleb explains his decision to become a medical researcher
11:57 - Tracking patient symptoms over time can lead to more accurate diagnosis and treatment because patients may not be aware of incremental progression
13:38 - Long questionnaires encourage patients to thoroughly interrogate their own health and reflect on how they are doing
14:34 - One patient, Mary Felstiner, wrote a book titled Out of Joint about the experience of completing the questionnaires.
17:10 - People who participate in registry studies statistically live longer than patients who choose not to participate.
18:04 - IFAA is creating our own databank, A Community Team (ACT). We are currently working on the second phase of the project, dubbed ACT II. For more information visit www.aiarthritis.org/ACTII
19:05 - Tiffany invites listeners to check out www.aiarthritis.org/aiarthritis-voices, the sister site of the Voices 360 Podcast, where you can contribute your ideas for ACT II as well as all of our episodes!
20:12 - IFAA and FORWARD are also using the new AiArthritisVoices.org platform - and associated databank - to focus on patients who are diagnosed with Undifferentiated Disease, or struggling to get a diagnosis, so they can track onset symptoms in real time
21:00 - Tiffany invites listeners to connect anyone who is struggling to be diagnosed with the site
21:10 - Kaleb points out that all the patient responses to questionnaires are read by members of the team, and all information is used
22:30 - Kaleb invites people to visit www.forwarddatabank.org/ to get involved with Forward
22:45 - Listeners can email Kaleb directly with questions at kaleb@ndb.org
22:53 - Tiffany thanks listeners and Kaleb for joining her for this episode
23:02 - IFAA wants to hear from you if you have been very involved in managing your own healthcare
23:10 - If you have feedback about the registry experience, we would love to hear from you as well
23:30 - Visit www.aiarthritis.org/podcast to get involved
Wednesday Dec 11, 2019
Wednesday Dec 11, 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 phenomenon of a shifting identity. The way we see ourselves can change radically after diagnosis or symptom onset of an AiArthritis disease. But, as Tiffany points out, “having these diseases isn’t the end of the world. It’s just another way of living in it.” Tune in, then speak up. We want to hear how your identity has shifted and how you’ve made a new life for yourself post-diagnosis. Who are YOU?
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 Dec 08, 2019
Sunday Dec 08, 2019
Welcome to AiArthritis Voices 360. This episode, your hosts Tiffany and Kelly are joined by special furry co-host Georgia Grace as they dive into the topic of animals and pet ownership. Learn about the difference between service, emotional support, and therapy animals and how owning a pet can benefit people living with chronic illness. They also discuss tips for selecting and caring for pets in spite of mobility challenges and weakened immune systems. Finally, learn about the experience of owning a pet with a chronic illness and how it can enrich your life.
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 4 – “Animals”
00:52 – Tiffany welcomes listeners
1:00 – Tiffany introduces Georgia Grace of “Making Lemonade with Georgia Grace” and owner, Kelly Conway, co-founder of IFAA.
01:45 - Georgia Grace is a 10 year old Cavalier King Charles Spaniel who has 10 chronic illnesses and was initially given a life expectancy of only 3 years
02:47 - Georgia’s story
06:49 - Georgia is a certified therapy dog
08:17 - 3 types of animals that are prominent in the AiArthritis community: emotional support animals, service animals, and therapy animals
09:45 - Tiffany adopted a rescue named Jack to help her combat depression and a sense of isolation
10:35 - Members of the AiArthritis community often depend on service, therapy, or emotional support animals to improve their quality of life
11:01 - Service animals are individually trained to perform tasks for their handler (ex: pulling wheelchairs, guiding the visually impaired, alerting high blood sugar or impending seizure)
11:33 - Emotional Support animals are usually dogs or cats, but not always
12:00 - Some people are abusing the accommodations for emotional support animals, which has a negative impact on people who genuinely need them
13:22 - Emotional support animals are specific to psychiatric disabilities and “other mental impairments” - which can include depression or anxiety
14:12 - Therapy animals must pass the Canine Good Citizen Test to be licensed, and only dogs with a very specific disposition will be able to pass the exam even after receiving intense training
16:56 - Therapy dogs must not beg for food, bark, climb or jump on people, react to loud noises, walk reliably on a leash, etc.
18:24 - Never approach a service animal or attempt to touch them or allow your children to do so
18:32 - People are able to pet therapy dogs as that is a big part of their function
18:41 - Only pet an emotional support animal if the owner allows it
19:51 - One of the benefits of pet ownership for people with chronic illness is that it can force the owner to exercise, which is good for patients even though the motivation can be very challenging when someone is in pain or not feeling well
21:00 - Not all breeds are a good choice for people with chronic illness. Researching breeds can inform choices based on exercise requirements, grooming requirements, space needs, etc.
22:20 - Having any pet can decrease blood pressure, according to the CDC
22:38 - Owning pets can encourage patients with chronic illness to socialize, which can also help with feelings of isolation
22:48 - If someone travels a lot, they should consider more independent pets like cats versus a dog that will require continuous care
24:18 - Having a weakened immune system can be an issue for pet owners due to zoonotic diseases, which are infections spread to humans by animals.
27:24 - People with weakened immune systems should wash hands after petting animals or handling their food.
27:37 - Scratches from animals can turn into cellulitis when you have a weakened immune system.
28:53 - Kelly discusses the experience of owning a chronically ill dog.
31:57 - Kelly was surprised at how many owners of chronically ill pets also have a chronic illness.
34:00 - Kelly shares tips for living well with pets even if you are battling a chronic illness.
39:50 - Tiffany and Kelly ask listeners to contribute their best tips to living more comfortably with a pet when you and/or the pet have a chronic illness.
41:06 - IFAA will publish safety tips about living with pets and weakened immune systems.
41:27 - IFAA will publish information about traveling internationally with service or emotional support animals.
41:49 - Tiffany asks listeners to log onto our website and let us know who you would like to have on the podcast in the future.
42:06 - This episode serves as the official launch for IFAA’s Annual Talk to Impact AiArthritis. Learn more at www.aiarthritis.org/talk
42:52 - Kelly will be giving away a “pawtographed” copy of Making Lemonade With Georgia Grace and a Living Well With Chronic Illness photo calendar to one lucky winner. Donate to the Talk to Impact AiArthritis to enter the contest.
44:00 - Talk to Impact is an annual charity fundraiser to generate end of year funds for IFAA so we can continue all of the work that we do.
45:20 - Tiffany thanks listeners and furry guests and invites everyone to check out www.aiarthritis.org/podcast
Wednesday Dec 04, 2019
Wednesday Dec 04, 2019
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. We invite you to join your host Tiffany as she tackles the sensitive topic of explaining the experience of AiArthritis to other people in your life. IFAA would like to hear from you! How do you explain your disease to others? Visit us online to take your seat at the table.
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 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