Your disease, my disease, Still's disease - what are doctors learning to expedite diagnosis?
Special Series: Reporting from the American College of Rheumatology (ACR) Scientific Meeting 2020
AiArthritis Voices 360 Full Episode 49
Air Date: November 15, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, and Patrice Johnson as they take us backstage at the American College of Rheumatology Annual Conference. Tiffany and Deb attended two sessions at the conference on Stills Disease, and they brief Patrice and the rest of us on what they learned. Regardless which "auto" disease you have, this conversation is important, as it provides an insider view of what is being taught to doctors to help them expedite diagnosis.
One of the most important take-away messages from the ACR sessions is that doctors need to hear patient stories (or Case Studies) to improve their understanding of our diseases - especially when they are rare, like Still's, or in cases where presentation mimics other conditions. Our organization is dedicated to making that happen - for all persons living with our diseases. Just join us by "pulling up a seat at the table", then begin helping us improve your journey and the lives of the other millions worldwide living with our diseases.
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Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our 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.
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Show Notes:
00:53 - Tiffany welcomes listeners
01:42 - Tiffany is joined today by Deb and Patrice
03:02 - AiArthritis Voices Online Community members can “go with us” to conferences, including the American College of Rheumatology (ACR)
04:17 - If you are a person living with an AiArthritis disease, register at aiarthritisvoices.org to join the co-hosts behind the scenes at the ACR
06:36 - The Learn and Connect Section on aiarthritisvoices.org will give you access to a variety of topics covered at ACR
07:11 - Today’s episode will cover a topic from 2 sessions at ACR on Stills Disease
09:03 - Patients diagnosed after age 16 are said to have Adult Onset Stills Disease (AOSD), while patients diagnosed before age 16 receive a diagnosis of Systemic Juvenile Idiopathic Arthritis
09:45 - Stills Disease is the new umbrella term that encompasses AOSD and SJI
12:39 - Stills Disease is rare and has historically been a difficult condition to diagnose
13:24 - Patients may be diagnosed with AOSD but recall having symptoms as a child, which complicated the diagnosis before the medical community adopted the umbrella terms of Stills Disease
14:20 - The pathology of the way the disease presents is largely the same regardless of the age of the patient
17:58 - Stills Disease is an autoinflammatory disease, which means there is no known trigger to the onset of the disease and results in more systemic symptoms
20:30 - Many Stills patients do not like being associated with the term “arthritis” because as many as 25% of them do not present with any arthritic activity
23:58 - For more information about Stills Disease, you can visit aiarthritis.org/mystills
25:02 - The ACR presenter recommended that patients and parents of juvenile patients keep a journal of symptoms to help doctors diagnose a problem effectively
29:13 - Most juvenile Stills Disease patients have onset before age 5
29:33 - Children that young do not have the communication skills to convey their symptoms, making journaling by the parents so critical due diagnosis
31:03 - Shared decision-making between doctors and patients is critical to satisfactory care
33:25 - Research has shown that active and uncontrolled autoinflammatory disease can act as a trigger for the adapted side of the immune system
35:00 - Stills Disease is a diagnosis of exclusion, meaning it can only be applied to a patient if autoimmune diseases have been eliminated as possibilities
38:26 - If you are a person living with Stills Disease or the parent of a juvenile Stills patient, we want you to share your story at aiarthritis.org/mystills
43:34 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this with us
44:31 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web at aiarthritis.org/talkshow or all social media platforms @IFAiArthritis
45:03 - Please consider supporting the show by donating at aiarthritis.org/talkshow
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).
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Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
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. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
Patrice Johnson
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