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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
Sunday Mar 15, 2020
Sunday Mar 15, 2020
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Simon Stones discuss the prevalence and logistics of living with multiple conditions. Most health systems have moved away from a model where General Practitioners are managing all aspects of patient care to a model that places more emphasis on specialists and a depth of expertise in a specific disease. The downside to this is it has created a system where patients must be their own Care Coordinators, yet most have no experience or understanding of how to do this. What can be done to change the system? What can you do in the meantime to ensure that your health is not slipping through the cracks? Tune in to this week’s episode to find out.
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 18 – “Living with Multiple Conditions”
00:52 - Tiffany welcomes listeners and co-host, Simon Stones
01:58 - Today’s topic is living with multiple conditions
02:20 – Tiffany’s primary diagnosis is Non-Radiographic Axial Spondyloarthritis, but she also has comorbidities such as Bechet’s Disease and possibly Sjogren’s Syndrome
03:25 - If you have been sick for a while without an explanation, a diagnosis can be a relief
04:27 - Simon was diagnosed with Juvenile Idiopathic Arthritis at age 3 and has no memory of his life before Arthritis
07:06 - At 10, Simon was diagnosed with Slipped Capital Femoral Epiphyses
08:30 - Sometimes secondary conditions can be masked by the symptoms of the primary diagnosis, even when under the care of specialists
09:23 - Patients assume that their specialists will catch new problems, but there is a high risk of new symptoms being dismissed as part of the existing diagnosis
09:45 - Every patient is an expert in their own body and must advocate if they know their symptoms are something to be explored
13:20 - In his teenage years, Simon’s diagnosis was modified to include Psoriatic Arthritis or Undifferentiated Axial Spondyloarthritis
14:50 - In the UK, no biologic therapies are approved for adults with JIA, so patients must have a new diagnosis so they can have access to medication
15:32 - Managing multiple complex diagnoses in a complex medical system can be very complicated
16:51 - Around 12 years old, Simon developed symptoms of Crohn’s Disease, but the symptoms and markers were attributed to his JlA diagnosis
19:03 - Doctors may be reluctant to order tests that are unpleasant for pediatric patients. Parents may need to advocate strongly for their children if they believe something is wrong.
26:02 - Medicine should be evidence-based and not vary wildly from one doctor to the next
27:10 - A comorbidity is the presence of two related diseases (like Rheumatoid Arthritis and Cardiovascular Disease or Psoriatic Arthritis and Psoriasis) where one is the index disease*
27:33 - Multimorbidity is the presence of multiple diseases without the presence of a specific index disease and requires more holistic treatment
29:23: Some people will combine terminology of related diseases (ex: Lupus and Rheumatoid Arthritis = Rupus)
29:40 - Multiple Autoimmune Syndrome (MAS) is a term many doctors and patients use to refer to the presence of 3 or more autoimmune diseases
30:56 - Simon read a study that asserted that 25% of the general population of rheumatology patients has 2 or more diseases, but Simon’s experience would suggest it may be much higher than that
33:13 - Gathering more data would be helpful
34:52 - The actual rarity of having only one autoimmune disease impacts clinical trials because patients with comorbidities and multimorbidities are all excluded from clinical trials
38:17 - When you have multiple diagnoses and multiple specialists, you may need to become your own coordinator of care
39:04 - Pediatric specialists seem to be better about coordinating with each other, but adult specialists often rely on the patient to report what they have been told by their other specialists
41:10 - If you are not advocating for yourself and managing your own care, you run the risk of important warning signs being missed
41:55 - General practitioners used to be very involved in managing patient care across multiple specialities, but that is no longer happening
42:43 - Healthcare systems now really could benefit from moving to a coordinated care model
46:02 - Obtaining health records can be very difficult because patient data is the property of the hospital or doctor’s office instead of the patient
49:40 - Patient advocates should unite to tackle the problem of inconsistent patient data and data ownership
54:27 - The system needs to change, and it can result from grassroots efforts
55:00 - Decision-making processes about reforming the healthcare systems must include patient voices
55:17 - Patients often have the best solutions to healthcare systemic problems because we know exactly what we need to make things work better and reduce waste
56:13 - Tiffany thanks Simon for co-hosting today’s episode
56:52 - If you have an opinion on this topic, IFAA wants to hear from you!
57:08 - If you would like to take a seat at the table, visit us on social medias @IfAiArthritis on all platforms or email us @ podcast@aiarthritis.org
*An index disease is a primary or core disease with a significant impact on the development of a comorbidity
Wednesday Mar 11, 2020
Wednesday Mar 11, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. Welcome to this week’s episode of AiArthritis Voices 360: At The Table.
Today we are talking about World AUTOimmune & AUTOinflammatory Arthritis Day (#AiArthritisDay) which occurs annually on May 20th. This annual event was established by IFAA as our first initiative as a nonprofit, aimed to raise global awareness about AiArthritis diseases - and, in particular, to differentiate our type of arthritis from others. This year, IFAA will be jumpstarting the activities by hosting the AUTO Ball on Saturday, May 2nd from 6-10PM in St. Louis, MO.
In addition to raising organizational funds and introducing IFAA to the local community, the event doubles as the official launch party to begin the countdown to our big awareness day! The AUTO Ball won't be your typical "gala" - nope! In addition to auto-themed food and auto "flair" attire, awareness activities will be streamed to social media where an online watch party will take place. AUTO Ball attendees and online participants can also enjoy the Race for Education and Awareness with LIVE broadcasting all night long, via this AiArthritis Voices 360 podcast!
For more information about World AiArthritis Day, check out https://www.aiarthritis.org/aiarthritisday. To learn more about the AUTO Ball, including how you can attend, visit https://www.aiarthritis.org/autoball.
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 Mar 08, 2020
Sunday Mar 08, 2020
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany Westrich-Robertson, as she and co-host Danielle Dass discuss discrimination against disabled people in the workplace. They dig into workplace accommodations, what to do if you are a victim of discrimination at work, and the connection between ableism and poor treatment of disabled employees. They also touch on how both delayed diagnosis and shifting identities can contribute to challenges in finding a work environment right for you. If you are a victim of workplace discrimination, a working person living with chronic illness, or a supervisor of other employees, this is an important episode for 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!
Show Notes: Episode 17 – “Discrimination In The Workplace”
00:52 - Tiffany welcomes listeners and co-host, Danielle Dass
02:09 - Today’s topic is discrimination in the workplace
02:20 – Danielle is a patient living with RA, Primary Biliary Cholangitis (an autoimmune liver disease), and Axial Spondyloarthritis
02:51 – Tiffany has Non-Radiographic Axial Spondyloarthritis
03:28 - Danielle’s workplace discrimination story
11:49 - Danielle was told that working was not in her best interest by her supervisors
12:20 - Treatment by supervisors made Danielle feel worthless and depressed
12:45 - Danielle never had a poor performance evaluation at work, but her supervisors still wanted her to resign
13:47 - Danielle went on disability leave 10 days after receiving the rheumatoid arthritis diagnosis
14:02 - She had medical documentation for all of her symptoms and illness even before receiving an AiArthritis diagnosis
14:39 - Danielle was surprised that the people discriminating against her had been her friends and were “nice” people
15:10 - Supervisors can have so much internalized ableism that they may not realize their beliefs are flawed or prejudicial
16:30 - Tiffany’s employers tried to accommodate her needs, but her needs kept escalating
19:00 - Tiffany changed careers and started IFAA so she could have a flexible work environment
19:38 - Accepting that you cannot work anymore even with accommodations can be very emotionally difficult for patients
21:28 - As employers transition to more flexible workplaces, employees living with chronic illness may find it possible to work longer
21:53 - Delay of diagnosis may prevent some patients from transitioning to more flexible careers before they become too sick to make career changes
22:33 - Workplace hostility and discrimination make it even more difficult to adjust to the identity changes that come when people are diagnosed with AiArthritis diseases
24:24 - Because your profession is so entwined with your identity, workplace discrimination can be extremely emotionally damaging
26:05 - Tiffany and Danielle asked people to send in stories about their own workplace discrimination and received quite a few responses over a period of only a few days
28:20 - Several patients reported hostile working conditions. Supervisors may hope that an employee will leave voluntarily if the workplace becomes very hostile
30:10 - The idea that accommodating a disabled employee is “unfair” to others is a pervasive theme in the stories received from other patients
31:00 - Supervisors or co-workers see symptoms of invisible illness and interpret it as laziness or incompetence due to internalized ableism
32:52 - A workplace accommodation is any change in the working environment that allows a person with limitations in their abilities to complete their essential duties
33:50 - Most people don’t have much experience with workplace accommodations and so are not sure how to accommodate specific challenges
34:22 - Employees must be able to perform their essential job duties
35:43 - Many people have difficulty separating the essential job duty from the way it is traditionally accomplished and so may incorrectly assume disabled people cannot perform those duties
36:18 - Internalized ableism is a fear of becoming or being disabled. See Episode 14 for more information about internalized ableism.
37:37 - Because people confused the objective and the method for accomplishing the objective, employers will list functions as “essential duties” that actually are not essential and can be accommodated. This needs to be addressed to make more jobs accessible to disabled people.
39:01 - If employers are listing essential duties incorrectly, they can discriminate against disabled employees without repercussion
39:40 - Often HR specialists who work in compliance roles have little to no experience or training in disability issues or patient advocacy
42:27 - EULAR was instrumental in getting social responsibility laws passed in Europe to prohibit workplace discrimination against patients with rheumatic disease specifically
43:01 - Accommodations requested by employees must be “reasonable”
43:44 - ARC Canada provided information on Canadian Law which said that accommodations are unreasonable if they endanger other people or compromise the organization’s financial viability
44:33 - According to the ADA in the US, reasonable accommodations are those which do not impose an “undue hardship” on the employer, which is commonly considered to be any significant difficulty or expense
45:07 - Whether an accommodation imposes an undue hardship is largely left up to employers to decide with very little oversight
47:33 - People are afraid to file complaints over accommodations because they fear retaliation
49:00 - Most victims of workplace discrimination cannot pursue lawsuits against their employer because they lack the financial resources to retain legal representation
50:40 - The average age of onset of AiArthritis diseases is 20-40, which is right in the prime of a person’s career usually
52:00 - Patients would benefit from resources that provide guidance about specific accommodations or legal aid
52:37 - Anyone experiencing discrimination or who is even concerned about potential discrimination should document everything that might be relevant to their story
53:50 - A physical record of documentation enables victims to have specific conversations with people who may be able to help them
54:49 - Highlighting victim’s stories to appeal to the public about the current state of discrimination in the workplace of disabled people is one of the most important things we can do as a community to change the state of things
55:29 - Victims may remain silent about their discrimination out of a sense of embarrassment
56:33 - If you are a victim of discrimination, you are not alone
57:10 - If you are a victim, the best thing you can do for yourself is to talk to someone about your experience
58:04 - People with disabilities are valuable and our ability to contribute to society should not be stunted by prejudice
58:37 - Disabled people who are given an opportunity to work with their talents can do amazing things
58:44 - If you have been the victim of workplace discrimination, please share your story with us on social media @IfAiArthritis on all platforms or via email to podcast@aiarthritis.org
Wednesday Mar 04, 2020
Wednesday Mar 04, 2020
Welcome to this week’s episode of AiArthritis Voices 360: At The Table. Today we are talking about the challenge of having an unpredictable disease when you are in a situation that demands predictability. Tiffany shares an experience she had when summoned to jury duty. Perhaps you have been an employee, patron, or student of an organization that adheres to rigid scheduling and fixed timelines. How do you deal with the unpredictability of symptoms and flares in an environment that lacks flexibility? Visit us on social media @IFAiArthritis or email us at podcast@aiarthritisvoices360.org to share your experience. Then tune in Sunday, March 8th for a longer conversation about inflexible work environments that can lead to discrimination against disabled or chronically ill employees.
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 Mar 01, 2020
Sunday Mar 01, 2020
Welcome to AiArthritis Voices 360. This week the show is wading into the complex world of therapeutic cannabis. Tiffany is joined by patient cohost Bridget Seritt, founder of the Canna Patient Resource Connection, an organization that collects comprehensive patient information for therapeutic use of cannabis products. They will discuss the various types of cannabis - CBD products specifically - legal issues, drug interactions, and how to safely incorporate CBD into your treatment plan. Whether you are a long time cannabis user or brand new to the idea of CBD, you will learn something new and useful in this episode. Listen in and then join us for a special Facebook event where you can ask your questions about therapeutic CBD.
The conversation doesn't end here! Join us on Facebook for a 'live' event where you can comment and ask questions about this episode. Tiffany and Bridget will be online periodically to check in. No worries if you can't make it today, it's Facebook, the posts aren't going anywhere: http://bit.ly/AiArthritisVoices360_CBD_Everywhere
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 16 – “CBD: It's EVERYWHERE!”
00:52 - Tiffany welcomes listeners and Bridget to the show
01:10 - Bridget Seritt founded Canna Patient Resource Connection, an organization that collects comprehensive patient information for therapeutic use of cannabis products
03:20 - Today’s topic will focus on CBD
04:07 - Conversations will focus on the patient experience. Bridget is not a doctor and cannot prescribe medication. You should take information back to your health care provider and discuss treatment options with them.
05:59 - The widespread availability of CBD products is confusing for patients and doctors
06:50 - Prior to 1960, all hemp products were legally classified as marijuana. Definition was changed in response to industrial lobbying.
07:19 - The only difference between hemp and marijuana is the level of THC in it.
07:28 - Federal definition of hemp is a plant that contains .3% or less THC.
10:24 - There are no standard definitions for broad spectrum, full spectrum, and isolate. But generally, full spectrum CBD contains all the cannabinoids, terpenes, and THC. Broad spectrum removes as much THC as possible.
11:45 - THC is the part of cannabis that produces an intoxicating effect.
15:15 - Information about CBD is primarily available online and is generally being circulated by people who want to sell CBD or have a political agenda. It may not be accurate.
17:42 - One site Bridget reviewed claimed CBD was legal in all 50 states, but it failed to mention any potential legal problems it could create for people
19:16 - CBD was removed from the schedule of controlled substances, but it was transferred to the regulatory authority of the FDA which considers it a “drug product.”
19:37 - The 2018 Farm Bill that legalized hemp also contained a clause that said the bill did not prevent states from regulating further. So unless state laws have been modified to remove CBD from their own controlled substances list, you could be violating state law even if it is federally legal.
21:34 - Using CBD would be a felony drug violation in South Dakota, even though it is totally legal in some other states.
23:24 - Always check with local municipalities for laws and regulations before beginning to use CBD.
23:40 - Canada allows all adults to use CBD, but they will not allow anyone to import it across the border.
24:10 - CBD isolates are legal in Idaho, but only ones made from hemp seeds and stalk. But CBD cannot be made from hemp seeds and stalk.
25:20 - In the United States, each state has a legal loophole that makes it illegal to give CBD to minors unless you participate in a state registry program. The Canna Patient Resource Connection has worked with four families recently who were in trouble with Child Protective Services for giving CBD to their child.
26:30 - In the US, mandated reporters, including teachers and doctors, are required by law to report you to CPS if you tell them that your child is taking CBD.
30:18 - The Arthritis Foundation surveyed people and found that over 70% were either interested in using CBD or already using it, so there is a lot of demand for accurate information about CBD.
34:19 - Very few patients experience relief immediately from taking CBD. It usually takes consistent use over time to see results.
37:12 - Cannabis has different effects at lower doses than it does at higher doses. Low doses tend to be more stimulatory, while higher doses tend to be more sedative.
37:38 - Some people may experience intoxication, so begin CBD therapy or increase your dose on a day when you do not need to be alert in case you experience a sedative effect.
40:48 - Oral CBD helps alleviate inflammation and neuropathic pain. Oral varieties are most comparable to extended release medications.
41:39 - Inhaled CBD via vaping is primarily recommended for acute symptoms.
42:39 - Vaping does not involve smoke or burning plant materials, and it is safe from reputable sources. Probably best for people with extreme nausea that do not have lung issues.
43:13 - Topical CBD products that include complementary essential oils are best. Entourage effects with topicals and essential oils are the most effective preparations for pain management.
46:07 - “Edibles” are a form of oral CBD where food is infused with CBD.
47:10 - Be wary of any commercial CBD infused products until you have researched them and seen lab testing. Most products infused with CBD are not going to be therapeutic.
47:59 - Avoid purchasing CBD from sources that you have not researched because there is no regulation currently in the US. Companies do not have to tell you what is in their product.
49:09 - Before you buy from a company, make sure that companies are batch testing every batch for THC content, solvent residues, heavy metals, and contaminants.
49:43 - Hemp is used to decontaminate soil. It will absorb many contaminants from the soil, so it is critically important that your CBD supplier be testing every batch for ground contaminants and heavy metals. Organic farming methods will not mitigate this risk.
51:18 - Always ask where a company is sourcing their hemp, and try to find a company that is using clean growing practices with local sourcing.
55:57 - Also ask what part of the plant is processed. You don’t want something from seeds or stalks. Ideally you want CBD sourced from flowers and some of the leaves.
53:48 - Look for a CBD that tells you how many mgs of CBD are in each mL of tincture, caplet, etc. so that you can regulate your dose for therapeutic purposes.
55:14 - Every oral drug that is metabolized by the cyp450 system will have some kind of drug interaction with CBD.
55:22 - CBD also cancels out some drugs completely, independent of the aforementioned liver action.
55:35 - CBD will cause some drugs to have a stronger effect than intended.
55:53 - CBD does interact with opiate receptors, so always consult a pharmacist before taking any opiate with CBD due to the potential for a toxic effect.
56:50 - Just because CBD comes from a plant doesn’t mean it is safe to use in every situation.
57:20 - CBD for aiarthritis diseases should be used in conjunction with prescribed medications, not as a substitute for DMARDs or Biologics.
58:55 - Most doctors and nurses have not received any formal training on therapeutic uses for cannabis.
1:01:43 - In states with legal medical cannabis programs, you can find a physician with cannabis training, and they should really be involved in your care decisions if you want to use therapeutic CBD.
1:03:09 - Visit the Canna Patient Resource Connection at keepitlegalcolorado.org for more information about therapeutic CBD use.
1:04:01 - Visit aiarthritis.org/podcast to continue the conversation about AiArthritis and CBD.
1:04:19 - Tiffany and Bridget will be hosting a Facebook event where you can ask questions about CBD. You can access that @IFAiArthritis on Facebook under the Event tab.
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!