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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 Feb 26, 2020
Wednesday Feb 26, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week’s topic is based on the International Foundation for AiArthritis' work to advance precision medicine by improving shared decision making between patients and their physicians. There are even ways YOU can get involved in helping advance these initiatives!
Tune in to learn about the initiative and the steps in the process. Then sign on to get involved!
Patients, rheumatologists, rheumatologist nurses, those with experience developing and implementing shared decision-making tools: Visit www.aiarthritis.org/precisionmedicine to learn more about our award-finalist project, Preparing Patients for Precision Medicine (PM), which focuses on PM education and developing shared decision-making tools to prepare for the advancement of PM clinical trials.
Patients: Help OMERACT (Outcome Measures in Rheumatology) Shared Decision-Making Working group. Participate in this survey today and help them develop guidance that will clarify key relevant domains that should be considered when initiating patient-doctor shared decision-making interventions. https://redcap.cheori.org/surveys/?s=ECYXEMPLDW
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!
Saturday Feb 22, 2020
Saturday Feb 22, 2020
This episode join co-hosts Charis Hill and Tiffany Westrich-Robertson as they discuss the important topic of overcoming internalized ableism, both individually and as a society. They discuss the reasons people living with AiArthritis diseases may find it difficult to transition to identifying as a disabled person. Charis also shares insight on medical vs social models of disability and some suggestions for overcoming our invisible prejudices against disabled people. They also touch on the United States federal disability benefits application process. This episode is important for everyone!
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 15 ”Invisible Ableism”
00:52 - Tiffany welcome listeners and co-host, Charis Hill
02:34 - Charis was diagnosed with Axial Spondyloarthritis in 2013
02:45 - They applied for Social Security Disability Insurance less than 3 years later
03:18 - Living with Ax-Spa has affected them mentally and physically
04:16 - Charis considers their identity as a disabled person to be very empowering
05:43 - The definition of disability is any condition that restricts one or more activities of daily living, which applies to anyone living with chronic disease
06:04 - Based on this definition, everyone living with an AiArthritis disease is disabled from symptom onset
06:40 - Most people have a moment where they decide to use assistive devices, and that is often accompanied by a change in identity
06:59 - Ableism is discrimination in favor of the able-bodied
07:40 - Ableism normalizes able-bodied and neuro-typical individuals as the privileged class
08:32 - The medical model of disability mentioned before is what is used to define disability from a legal standpoint
09:05 - The medical model of disability blames the individual for being impaired and views them as incomplete or in need of fixing
09:14 - The social model of disability places the responsibility on society to make the world more accessible to all people, regardless of impairment
09:32 - “My disease impairs me, but society is what disables me”
09:41 - Disease does not prevent someone from entering a building. Society’s preference for stairs prevents them from entering the building or being able to participate.
10:24 - Internalized ableism is a fear of becoming or being disabled
11:34 - Children are socialized to blame their body for not doing what society says it should do
12:10 - Using assistive devices allows disabled people more freedom to participate in life
14:18 - Tiffany has avoided using devices that could improve her quality of life out of fear of being judged by others
17:41 - Part of the hesitation to use devices may stem from fear of letting go of their former identity
19:30 - Letting go of ability and losing privilege is a scary transition because you are completely shifting your outward appearance to the world
20:30 - Disabled people make up one of the largest minorities in the world, but also one of the most oppressed identities in the world
21:36 - Charis’ transition in identity began with using canes and wheelchairs in airports
22:13 - Why shouldn’t canes be accessories?
24:18 - Charis is sometimes politically motivated to park in accessible spots when they are not using their cane to normalize invisible disability
24:47 - If people confront Charis for parking in an accessible spot, they ask the person to please explain what a disabled person looks like
25:17 - Shortly after borrowing a wheelchair, Charis realized that they wanted their own wheelchair so they could be independent and participate in activities
27:46 - Never assume someone needs help or put your hands on someone’s wheelchair without asking
28:20 - In the same way you would obtain consent before touching someone’s body, you should always have consent before touching someone’s wheelchair because it is an extension of their body
29:18 - Sometimes non-disabled people have a tendency to treat disabled people as though they are not fully human
32:25 - There is so much value in our culture associated with working, which feeds ableism
33:50 - When your disease is unpredictable, it can be challenging to identify as disabled because you don’t feel disabled every day even though you have that disease every day
37:31 - Many people in the disability community are shifting to identity-first language (disabled person) vs person-first language (person with a disability), but you should ask about preference because there is not universal agreement
39:44 - On average, it takes 3-5 years in the United States for disabled people to receive federal disability benefits
41:40- Disability in the US does not pay a living wage, so there is a lot of fear associated with relying on that to survive
42:01 - The US discourages people from applying for disability benefits by making the application process very difficult, long, and expensive and by denying half of the applicants
43:42 - Charis recommends that anyone who applies for federal disability benefits in the US should use a disability attorney from the start
44:14 - Tiffany asks any international listeners to submit tips for applying for disability benefits in other countries
45:00 - Universal accessibility - which can apply to any space - is a model that seeks to maximize usability for as many people as possible
46:39 - Overcoming internalized shame - both as a society and an individual - is an important step to overcoming ableism
46:57 - At least 20% of the US population lives with a disability
49:00 - Buttons that make doors accessible to disabled people are not legally required to work in all locations in the US
51:00 - Eyeglasses are an assistive device that are now widely accepted by society, which demonstrates that shifts in acceptance can happen
52:20 - Tiffany thanks Charis for nominating the topic and coming on the show to lead the discussion
52:41 - Tiffany invites listeners to join the discussion on social media @ifaiarthritis on all platforms
53:00 - Listeners are invited to visit aiarthritis.org/podcast to submit topic ideas or get involved with the show
Wednesday Feb 19, 2020
Wednesday Feb 19, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week we are focusing on a topic that originated from part of a conversation between co-hosts Tiffany and Kelly (persons living with an AiArthritis disease) and Dr. Alfred Kim, rheumatologist. In the discussion, Dr. Kim states he is typically already prepared for how the visit will go before ever walking in the room. However, Tiffany pointed out that patients not only come to the visit potentially planning to present new information but that their past experiences throughout their disease journey also will impact the visit dynamic.
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Patients: How does your disease journey affect your current rheumy office visit expectations and/or communication needs?Medical professionals: Do you consider the patient’s journey - including any potential fears they are bringing to the visit - when determining visit objectives or successful outcomes?
Given the average office visit is 15 minutes, it is important that both of these stakeholder groups better understand how the patients’ history can impact conversations today.
Submit your comments via email: podcast@aiarthritisvoices360.org or on Facebook, Twitter, or Instagram at @IFAiArthritis.
This episode excerpt is from our pilot series, Rheumy Rounds, a break out series of AiArthritis Voices 360. This show is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA). Find us on the web at www.aiarthritis.org/podcast where you can find all of our episodes, submit topic suggestions, and more!
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 Feb 16, 2020
Sunday Feb 16, 2020
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).
Show Notes: Episode 14 ”Rheumy Rounds™ Pilot Episode Episode 14: Office Visit Communication Obstacles (Part 2)”
00:52 - Tiffany welcomes listeners to the show
01:46 - Listeners may experience Rheumy Rounds episodes out of order
01:59 - Rheumy Rounds started because patients identified a need to better communicate with their rheumatologists
02:32 - Guests this episode include Dr. Alfred Kim and Jerik Leung, who have done research on patient needs and communication barriers
04:18 - Dr. Kim gets most of his information about patient and public perception of diseases from his patients who have been googling their diagnoses
05:45 - Up to 80% of human assumptions are wrong, and most of us base our decisions and behaviors on these assumptions
06:46 - Dr. Kim says google may be misleading for patients and frustrating for their doctors
07:25 - For many physicians, the emotional aspects of the disease aren’t actionable from a clinical perspective.
08:00 - Patients may be on the defensive at the outset of appointments due to previous negative interactions with rheumatologists
09:00 - Learning to advocate for yourself is necessary for patients living with chronic illnesses
11:10 - IFAA conducted a study in 2013 that found that at least 30% of AiArthritis patients experience brain fog within 12 months of symptom onset regardless of diagnosis
11:54 - Very difficult for physicians who have no personal experience with chronic or severe illness to be empathetic with patients because they simply do not understand
12:53 - It’s important for physicians to ask patients to clarify their symptoms if they do not have any personal experience with them
14:18 - Some doctors aren’t comfortable being in a space where they are no longer acting as the expert, so they won’t ask questions to clarify the patient perspective vs the clinical perspective
15:29 - May be easier for physicians to ask questions of patient advocates as opposed to their own patients within an appointment
17:24 - Patients who can describe their own symptoms very specifically and very accurately (without hyperbole) make the most effective communicator with their physician
18:20 - Patients must know their own body and their own symptoms (like where specifically is the pain within a certain joint or what precise motions are more painful than others)
20:12 - Photos, symptom journals, or lists of topics you want to discuss should be sent to your
physician a week before your appointment so they can prepare for the appointment and use
the time most efficiently
22:30 - A proposal to put NYC physicians on Yelp was widely opposed by physicians who did not want patients reviewing them publicly
22:59 - Dr. Kim wanted his Lupus Clinic to be on Yelp because he wants to know what patients are telling each other about their experience
23:29 - HealthGrades is a website that allows patients to review their US-based doctors
26:03 - Mutual trust is critical between the patient and physician
26:53 - Occupational therapy support may increase patient compliance with their treatment plan and help them and their caregivers achieve a better quality of life
28:05 - Physicians may not address complaints from patients that they are not equipped to handle, but they should be able to refer the patient to someone who can help them
28:59 - Most common reasons people “fire” their doctor: they feel unheard or treatments are not
meeting their expectations
30:33 - Both doctors and patients could potentially benefit from training on how to interact positively and productively with each other
32:15 - Rheumatologists, visit us at AiArthritis.org/rheumyrounds to get involved with the show
32:37 - Patients, please visit us at AiArthritis.org/podcast to contribute your thoughts or sign up to be a co-host
Wednesday Feb 12, 2020
Wednesday Feb 12, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week we continue the conversation from Sunday’s full-length episode of Rheumy Rounds™, a break out series that brings rheumatology professionals & persons affected by AiArthritis diseases to the same table, as equals, to discuss important community topics that, if solved, would improve communication and positively impact outcomes.
Patient host Kelly and special guest, rheumatology researcher Jerik Leung, discuss Jerik's research into the importance of building a social support network for patients living with AiArthritis diseases.
If you like this episode and haven’t listened to Sunday’s conversation, we invite you to listen to it and then join the conversation by submitting your comments HERE. Also, stay tuned this Sunday for the compelling conclusion to this round table discussion!
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.
Learn more about Rheumy Rounds™ at www.aiarthritis.org/rheumyrounds
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 Feb 09, 2020
Sunday Feb 09, 2020
Welcome to AiArthritis Voices 360! Today we are introducing Rheumy Rounds™, a concept developed by the International Foundation forAutoimmune & Autoinflammatory Arthritis (AiArthritis) that will unite two very important stakeholder groups - the rheumatologist (as associated rheumatology professionals) and the patient - in roundtable discussions where both parties will be on equal levels discussing important topics that, if solved, can improve outcomes.
- How does each stakeholder view the expectations and the goals of the visit and how do they align with one another?
- When a patient sees a new rheumy they often feel it's "starting over", but if the medical records are intact, the doctor views it a continuation of care - how do these differing mindsets affect behaviors?
- How do social determinants affect care? (geography, outside social support, income, etc.)
- Rheumies are people too - how does emotional burn out affect visits?
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Tou can find this episode and more information about Rheumy Rounds, including how to be part of the show and submit future topics, at www.aiarthritis.org/rheumyrounds.
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 13 Rheumy Rounds Pilot Episode: Office Visit Communication Obstacles (Part 1)
00:52 - Tiffany welcome listeners to the pilot episode of Rheumy Rounds
01:15 - Tiffany is joined today by co-host, Kelly
01:36 - Tiffany identifies her diagnoses
01:58 - Kelly explains her diagnosis
02:35 - Tiffany welcomes today’s guests: Dr. Alfred Kim and Jerik Leung
03:01 - Kelly introduces Dr. Kim and Mr. Leung and explains their work focus in the AiArthritis Community
04:54 - Tiffany explains the goals of the Rheumy Rounds Series
07:04 - Today’s Topic: Improving Doctor / Patient Communication
08:12 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects
09:20 - Patients who are not connecting with their doctor and aren’t understood by their family will often seek out online communities so that they feel understood by someone
13:05 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?
13:54 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers divined from test results. The physician has to review as much information as possible to arrive at a correct diagnosis.
14:50 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have
15:13 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication
17:13 - Rheumatologists primarily base treatment plans on symptoms, rather than diagnosis. This is different than 99% of medicine practice and is confusing for patients.
20:08 - 80% of health outcomes are determined by social determinants, and only 20% is based on medical care
20:14 - Social determinants are the variables of how your living and working situation influences your health (income, education, social support, addiction status, employment status, etc.)
20:40 - Physicians have no meaningful training in influencing social determinants in their patients
23:30 - Patients really benefit from having collaboration between their doctors and having someone coordinate the services they need - both medical and social determinants - all in one place
29:45 - Physicians must translate colloquial information from the patient to technical information so that it will align with their training and then translate it back to colloquial format so the patient will understand it and be able to explain it to their social support network
30:18 - Physicians receive no formal training in communicating effectively with patients
32:33 - Patients should document concerns as they go so that they can communicate them effectively with their physician
32:50 - Shortened appointment times, electronic medical records requirements, and overwhelming workloads all contribute to emotional burnout among physicians who want to provide emotional support for patients
Wednesday Feb 05, 2020
Wednesday Feb 05, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week Tiffany introduces the new breakout series “Rheumy Rounds” which debuts this Sunday. We want your help! To make this unique series a success, we need your input. In this episode, Tiffany will explain why your thoughts are so important and how you can provide it. All Rheumy Rounds episodes will feature conversations between AiArthritis patients and Rheumatologists who agree to come on the show and help improve communication between patients and their doctors. We look forward to seeing you 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 Feb 02, 2020
Sunday Feb 02, 2020
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Effie Koliopoulis discuss the challenges of living with an invisible illness or disability. Listen as they dig into the emotional and physical challenges people face every day by sharing their own experiences with the uncaring assumptions of others. People living with an AiArthritis disease regularly experience both friends and strangers disbelieving or not understanding what these illnesses entail. We hope this episode will be the first step to raising awareness and empathy for people suffering in silence. Spend some time with Tiffany and Effie and then log on to social media to share your story (@ifaiarthritis)!
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!
Wednesday Jan 29, 2020
Wednesday Jan 29, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. This week’s topic is coping with an invisible illness. How do you get the support and accommodations you need when people think you look healthy? Have you ever had an incident that shaped the way you behaved moving forward? Do you feel pressure to be performative in some way with your disability? Listen to Tiffany’s story, then log on to Twitter, Facebook, or Instagram to share yours (@IfAiArthritis on all platforms).
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 Jan 26, 2020
Sunday Jan 26, 2020
Mariah is the founder of Mamas Facing Forward, an organization that supports Mothers with chronic illness, and a mother who has experienced both non-medicated and medicated pregnancies. Deb experienced pregnancy when doctors believed that AiArthritis patients could not take any medication during pregnancy or breastfeeding, and Tiffany inquires about concerns from a person who may be interested in planning a family.
Mother to Baby is an organization that collects and analyzes information on the safety of medication during pregnancy and breastfeeding. If you or your partner are thinking about becoming pregnant, this is a can’t-miss episode for you!
Learn more about Mamas Facing Forward:
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 11 – “Pregnancy Planning With A Chronic Illness”
00:51 – Tiffany welcomes listeners and fellow patient co-hosts, Deb Constein and Mariah Leach
03:30 - Mariah’s Story
04:35 - Mariah founded Mamas Facing Forward (www.mamasfacingforward.com and private support group on Facebook) to support mothers experiencing chronic illness
07:15 - Pregnant women are under societal pressure to avoid any medication while pregnant, which can be dangerous for both mother and fetus
08:30 - Options for pregnant and breastfeeding women living with AiArthritis are improving due to new research and new data on safety
10:41 - Rheumatologists that have been in practice for a long time may need updated information about treatment options during pregnancy and breastfeeding
11:55 - Women living with a chronic illness need a pregnancy plan to improve outcomes
12:50 - Some women experience temporary remission during pregnancy, but others may have flares or more symptoms while pregnant
13:50 - Patients may not be honest with their rheumatologist about stopping contraception if doctors are not supportive of women’s choices and take an active role in pregnancy planning
15:37 - Pregnancy plans should include a treatment plan even if patients would like to attempt a med-free pregnancy
17:26 - Pregnant women with chronic illness need support and may need assistance in caring for other children
17:45 - AiArthritis women need a post-pregnancy plan because diseases tend to flare immediately after birth
18:45 - Other people may be judgmental about the way new mothers care for their babies due to limitations imposed by their disease
19:30 - Confidence and the ability to advocate for their own needs are critical for new mothers living with AiArthritis diseases
20:03 - New mothers need to be prepared for people to criticize their use of medication
20:44 - Women who need to use formula so they can take certain medicines experience judgment and criticism
23:29 - Researchers cannot conduct clinical trials on pregnant women, but MotherToBaby and other organizations can collect and analyze observational data
23:40 - Pregnant women can contribute to MotherToBaby studies with very little effort required
25:30 - Find a rheumatologist and an Obstetrician that support your pregnancy plan before conceiving if you can
26:27 - lupuspregnancy.org has resources about how to talk to your doctor about your pregnancy plan
29:44 - Tiffany welcomes Lynette from MotherToBaby
30:24 - Lynette explains the work of MotherToBaby
31:35 - Lynette discusses how MotherToBaby obtains their data
32:30 - MotherToBaby believes that all women should have access to medication safety information and that it should be intelligible to them
35:30 - When people claim that a medication-free pregnancy is always safer, they are ignoring the risks of an untreated chronic illness for the mother and the fetus
36:45 - There are new options for safe treatment while breastfeeding
37:35 - Women must be their own advocate when navigating the healthcare system
38:16 - Patients and doctors can visit mothertobaby.org for information on medicine safety, or they can call 1-877-311-8972 to speak to a trained teratogen information specialist
39:01 - Resources about all aspects of pregnancy and motherhood with chronic illness are available at mamasfacingforward.com
40:53 - Tiffany thanks everyone and invites listeners to visit www.aiarthritis.org/podcast to access resources and provide your thoughts on this topic