The "A" Word

AiArthritis Voices 360 Full Episode 46

Air Date: October 4, 2020

Join Tiffany, Rick, Effie, Deb, Patrice, Suz, and Judy as they talk about the frustrations surrounding the word "arthritis". They talk about how misunderstandings lead to delays in diagnosis and treatment and public confusion (it's not all the same!) They also go into a touchy subject - changing disease names to avoid the word altogether. 


We are putting this conversation on the table so you can join us inside our new and improved AiArthritis Voices online community - starting October 12th, World Arthritis Day - to continue the discussion. Then, together, we can increase educational efforts to combat this issue and bring more understanding to arthritis types. 

LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

(See table icon below)

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Pull up your seat at the table

Now it's YOUR TURN to join the conversation!

What do you think about this episode?

We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community.  Better yet, through these conversations we can start working and developing solutions.


We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!


Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)

Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!

Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!

The AiArthritis Voices Program

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.


If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect. 

Join AiArthritis Voices
NOW IT'S YOUR TURN TO JOIN THE CONVERSATION!
Would you like to actually continue this conversation with Tiffany, Rick, Effie, Deb, Patrice, Suz, and Judy?  Well, you can! 

As always, now it's YOUR TURN to join us "at the table" on this Talk Show AND all the work we do at our organization... but now you can do it all in one place, inside our NEW coordinating AiArthritis Voices ONLINE COMMUNITY.   Sign up (FREE) today!

There is a short application to complete, then we will contact you to inform you of your approval - along with directions to join and who your Site Guide will be. Site Guides are also people  living with our diseases who will walk you through step-by-step to ensure you get connected to all the projects, activities, and resources that are most important to you.

Patients & Parents of juveniles: Join AiArthritis Voices

All other stakeholders: Significant others, family members, health care workers, government officials, companies (pharmaceutical and nonpharmaceutical) - any person who is in some way connected to a person living with AiArthritis diseases, we need YOU "at the table" too! Join us by signing up to be part of the conversation in a variety ways, including through our new UPGRADED AiArthritis Voices community site and our show!

All Other Stakeholders

Notas del programa: Episodio 46 - El "A" Word


00:53 - Tiffany da la bienvenida a los oyentes

01:20 - Tiffany presenta a su panel de pacientes coanfitriones, entre los que se incluyen Deb, Rick, Effie, Patrice, Suz y Judy.

03:18 - El episodio de hoy tratará sobre la diferenciación de los tipos de artritis y la naturaleza controvertida de "La palabra con A".

04:00 - Los panelistas discuten las frustraciones que tienen los pacientes con artritis inducida por adyuvante porque la palabra "artritis" generalmente se asocia con personas mayores, pero la mayoría de los pacientes con artritis inducida por adyuvante presentan el inicio de la enfermedad cuando son jóvenes.

05:35 - Los pacientes pueden evitar la palabra "artritis" cuando hablan de sus problemas médicos con otras personas porque mucha gente tiene ideas erróneas sobre la palabra.

08:44 - Otros pacientes pueden tener cuidado de decir "artritis autoinmune" para evitar que la gente piense en la osteoartritis tradicional.

10:46 - Debido a una comprensión deficiente del término "artritis", los médicos pueden desestimar síntomas en personas jóvenes o síntomas sistémicos de enfermedades reumatológicas que no están relacionados con daños en las articulaciones.

15:17 - Suz habla sobre la importancia del diagnóstico y tratamiento precoces.

18:37 - El tratamiento para las enfermedades de artritis autoinmune generalmente se centra en prevenir el daño articular, pero a menudo se ignoran por completo los demás síntomas sistémicos.

25:09 - Los pacientes pueden sentirse frustrados cuando tienen que explicar la diferencia entre la osteoartritis y la artritis autoinmune a otras personas.

25:44 - A veces, las personas son reacias a consultar a un reumatólogo y solo comentan sus síntomas con su médico de cabecera, quien puede no ser capaz de determinar si el dolor articular es artritis autoinmune u osteoartritis.

29:05 - La comunidad de la enfermedad de Still ha intentado recientemente alejarse del término "artritis" debido a la frustración por la imposibilidad de obtener atención médica precisa.

31:11 - En realidad hay más de 100 tipos diferentes de artritis, pero la mayoría de la gente solo entiende la osteoartritis y ni siquiera sabe que existen otros tipos.

32:31 - El público parece comprender mejor las características complejas de otras enfermedades (como la diabetes y el asma) que las de la artritis.

34:42 - Las comunidades médicas y de diabetes han dedicado más de 20 años a educar a las personas sobre las características complejas de la diabetes para mejorar los resultados de los pacientes.

35:58 - Debido a que la mayoría de las personas experimentarán osteoartritis en algún momento de sus vidas, es el tipo de artritis que siempre será mejor comprendido que otros.

38:26 - La comunidad de lupus no desea ser asociada con el término artritis, aunque la artritis autoinmune es un componente clínico de su enfermedad.

40:09 - A veces la gente no comprende la gravedad de la AIArthritis porque cree que los pacientes nunca mueren a causa de esas enfermedades.

41:24 - La conferencia EULAR 2020 contó con numerosos seminarios sobre la naturaleza sistémica de las enfermedades de la artritis inducida por adyuvante, ya que causan más que solo daño articular.

42:49 - Muchos pacientes querían que se cambiara el nombre de su enfermedad para distinguirla de la artritis, lo que requiere un esfuerzo global conjunto de todas las partes interesadas.

44:15 - Además de los problemas con la codificación y la investigación, cambiar el nombre de las enfermedades consumiría muchos recursos que podrían utilizarse para la investigación o el desarrollo de nuevos medicamentos.

49:58 - La escasa comprensión de las enfermedades de la artritis por parte del público y la comunidad médica tiene un impacto emocional en los pacientes, quienes se sienten incomprendidos y sin apoyo.

52:36 - La naturaleza invisible de las enfermedades de la artritis también puede causar angustia emocional y física a los pacientes, ya que la sociedad impone expectativas poco razonables sobre ellos.

54:12 - A la gente le resulta tan incómodo hablar de enfermedades y muerte que, sin querer, pueden soltar comentarios poco solidarios en un intento equivocado de animar a alguien.

59:47 - Únase a todos los coanfitriones de AiArthritis Voices 360 para hablar sobre este y otros temas visitando aiarthritis.org/aiarthritisvoices Únete a nuestra nueva plataforma en línea, que se estrenará el Día Mundial de la Artritis, el 12 de octubre de 2020.


Voces de los pacientes y demás partes interesadas: ¡Únase a nuestro programa AiArthritis Voices y acceda a oportunidades para que su voz sea escuchada!


Si usted es paciente, padre o madre de un paciente menor de edad, o cualquier otra persona interesada (médico, enfermero, investigador, representante de la industria u otro profesional de la salud), ¿está listo para participar en la conversación? Es su turno de unirse. Únete a nuestro nuevo programa AiArthritis Voices, donde las personas que viven con enfermedades de AiArthritis y otras partes interesadas que necesitamos "en la mesa" para resolver problemas que afectan la educación, la defensa y la investigación se inscriben para tener voz en nuestras iniciativas. Al registrarte, recibirás notificaciones sobre oportunidades para participar más activamente en este programa, incluyendo la posibilidad de enviar comentarios después de cada episodio y obtener información privilegiada sobre los temas que se tratarán en el futuro. Se anima a los pacientes y a todas las demás partes interesadas a participar para que podamos ofrecerles oportunidades de unirse y, JUNTOS, en igualdad de condiciones, resolver los problemas de hoy y de mañana.


¡ÚNETE HOY MISMO!

AiArthritis Voices 360 es un programa producido por la Fundación Internacional para la Artritis Autoinmune y Autoinflamatoria. Visítenos en la web enwww.aiarthritis.org/talkshow. Encuéntranos en Twitter, Instagram, TikTok o Facebook (@ifAiArthritis) o envíanos un correo electrónico (podcast@aiarthritis.org).

No te pierdas nuestro programa mejor valorado en Feedspot¡


Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?

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.


Rick Phillips

Lawrence 'Rick' Phillips ha dedicado más de 30 años a la administración pública local y a la gestión de distritos escolares en Indiana. Ha ocupado diversos cargos, como Director de Finanzas, Contralor Municipal, Director de Personal, Director de Desarrollo y experto en informática (este último puesto duró un año). Creció y vive en el centro de Indiana con su esposa Sheryl, con quien lleva casado más de 40 años. Tienen dos hijos y tres nietos. A Rick le diagnosticaron diabetes tipo 1 en 1974 y artritis reumatoide en 2000. También le diagnosticaron espondilitis anquilosante en 2015. Rick ha utilizado seis medicamentos biológicos y se ha sometido a varias cirugías relacionadas con la artritis reumatoide.

Le diagnosticaron espondilitis anquilosante en 2016 y en ese momento juró vivir hasta tener al menos cinco enfermedades autoinmunes. Bueno, un hombre necesita una meta. Le encanta andar en bicicleta, no lejos ni rápido, sino por diversión. A menudo escribe sobre artritis reumatoide y diabetes en su sitio web, RADiabetes.com. Rick hablará de sus nietos si tiene la más mínima oportunidad. Atribuye su sentido del humor irónico a su padre y a sus años de trabajo en el sector público. Rick obtuvo su licenciatura y maestría de la Universidad de Indiana en 1979 y 1989, respectivamente, y un doctorado en educación de la Universidad Nova Southeastern en 2012.

Effie Koliopoulos
Effie is a writer, blogger, and award-winning patient advocate. Her interest in advocacy began a decade ago when she interned for the Arthritis Foundation in Chicago. Since then she has expanded her outreach by working with various organizations and attending the American College of Rheumatology Conference in Washington D.C., to discuss the concerns and needs of the arthritis community to legislators. She created her blog, Rising Above rheumatoid arthritis in 2016 in order to share her story, connect with others and raise awareness for the community. Effie has been featured in places such as, Yahoo Lifestyle, Everyday Health, Health Central, WEGO Health, NewLifeOutlook, theRAconnection, and The Mighty. She is born and raised in the Chicagoland area, where she currently resides and is working on her debut children’s book. Her recent three-part film series, I Am Invisible No More can be viewed on her YouTube channel, RA and Myself.

Deb Constien
Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be. 

She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.

Patrice Johnson

Originally diagnosed with Rheumatoid arthritis 9 years ago, Patrice now has an undifferentiated diagnosis. She has also been told she has had Osteoarthritis for 35 years. Along the way she developed some comorbidities which include severe hearing loss, a Baker's cyst, osteopenia, and a vein ablation. Patrice lives in Northern California and have 2 grown children and 5 grandchildren. She loves to travel, read, and cook.  

Suz Schrandt
Suz Schrandt is a patient diagnosed decades ago with Juvenile (Rheumatoid, now called Idiopathic) Arthritis and patient engagement advocate with a health and disability law background. 

She recently launched a new patient engagement initiative called ExPPect and is currently serving as the Senior Patient Engagement Advisor to the Society to Improve Diagnosis in Medicine. Schrandt previously served as Director of Patient Engagement at the Arthritis Foundation, and as Deputy Director of Patient Engagement for PCORI. Her career spans work in health reform, bioethics, and genetic discrimination, as well as a long history in patient-led clinical training. Schrandt is one of nine voting members on the FDA’s inaugural Patient Engagement Advisory Committee, the Chairperson for the International Society of Pharmacoeconomics and Outcomes Research North American Patient Roundtable, and has been an invited speaker at numerous US and international conferences. Schrandt received her law degree from the University of Kansas and has co-authored multiple publications on health policy and the value of patient engagement. 

More about ExPPect: Patient engagement should be the expectation and not the exception. ExPPect is like a 'do-tank' if you need to get patient engagement done, or you need to understand what patient engagement is, or how to involve patients in important work in healthcare research or clinical education training. 

Society to Improve Diagnosis in Medicine is working to create a world where no patients are harmed by diagnostic error.

Judy Flanagan

Judy is a person diagnosed with Rheumatoid Arthritis from Australia. She is a dedicated volunteer Representative for our organization and an IPain Patient Partner (International Pain Foundation).

Relevant Episodes & Projects

Diagnosis STAT!

Click here to listen to episode 6 where Tiffany and Suz discuss the importance of early detection and diagnosis, address barriers to receiving an accurate diagnosis, talk about what patients can do to increase their chances of receiving an accurate diagnosis in a timely fashion. 

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