AiArthritis Voices 360 Podcast
Episode 49: Your disease, my disease, Still’s disease - what are doctors learning to expedite diagnosis?

Episode 49: Your disease, my disease, Still’s disease - what are doctors learning to expedite diagnosis?

November 15, 2020

Special Series: American College of Rheumatology (ACR) Scientific Meeting 2020, "Go with Us!" to Conferences program

 

This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, and Patrice Johnson as they take us backstage at the American College of Rheumatology Annual Conference. Tiffany and Deb attended two sessions at the conference on Stills Disease, and they brief Patrice and the rest of us on what they learned.  Regardless which "auto" disease you have, this conversation is important, as it provides an insider view of what is being taught to doctors to help them expedite diagnosis. 

One of the most important take-away messages from the ACR sessions is that doctors need to hear patient stories (or Case Studies) to improve their understanding of our diseases - especially when they are rare, like Still's, or in cases where presentation mimics other conditions. 

 

Join us as we continue attending conferences, like the ACR, in our AiArthritis Voices online community - "Go with Us!" to Conferences program. It's your turn to pull up a seat! Join Tiffany and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect. 

 

JOIN TODAY!

 

Living with Still's disease? If you are a patient living with Stills or the parent of a juvenile living with Stills, AiArthritis wants to hear from you! Visit our Stills Disease Awareness project at aiarthritis.org/mystills where you can submit your Stills Disease story.  There you will also find patient-reported Still's brochures and educational materials for download.

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.  

 

 

Show Notes: Episode 49 

 

00:53 - Tiffany welcomes listeners

01:42 - Tiffany is joined today by Deb and Patrice

03:02 - AiArthritis Voices Online Community members can “go with us” to conferences, including the American College of Rheumatology (ACR)

04:17 - If you are a person living with an AiArthritis disease, register at aiarthritisvoices.org to join the co-hosts behind the scenes at the ACR

06:36 - The Learn and Connect Section on aiarthritisvoices.org will give you access to a variety of topics covered at ACR

07:11 - Today’s episode will cover a topic from 2 sessions at ACR on Stills Disease

09:03 - Patients diagnosed after age 16 are said to have Adult Onset Stills Disease (AOSD), while patients diagnosed before age 16 receive a diagnosis of Systemic Juvenile Idiopathic Arthritis

09:45 - Stills Disease is the new umbrella term that encompasses AOSD and SJIA

12:39 - Stills Disease is rare and has historically been a difficult condition to diagnose

13:24 - Patients may be diagnosed with AOSD but recall having symptoms as a child, which complicated the diagnosis before the medical community adopted the umbrella terms of Stills Disease

14:20 - The pathology of the way the disease presents is largely the same regardless of the age of the patient

17:58 - Stills Disease is an autoinflammatory disease, which means there is no known trigger to the onset of the disease and results in more systemic symptoms

20:30 - Many Stills patients do not like being associated with the term “arthritis” because as many as 25% of them do not present with any arthritic activity

23:58 - For more information about Stills Disease, you can visit aiarthritis.org/mystills

25:02 - The ACR presenter recommended that patients and parents of juvenile patients keep a journal of symptoms to help doctors diagnose a problem effectively

29:13 - Most juvenile Stills Disease patients have onset before age 5

29:33 - Children that young do not have the communication skills to convey their symptoms, making journaling by the parents so critical due diagnosis

31:03 - Shared decision-making between doctors and patients is critical to satisfactory care

33:25 - Research has shown that active and uncontrolled autoinflammatory disease can act as a trigger for the adapted side of the immune system

35:00 - Stills Disease is a diagnosis of exclusion, meaning it can only be applied to a patient if autoimmune diseases have been eliminated as possibilities

38:26 - If you are a person living with Stills Disease or the parent of a juvenile Stills patient, we want you to share your story at aiarthritis.org/mystills

43:34 - If you are a patient or the parent of a juvenile living with an AiArthritis disease, please join us at aiarthritisvoices.org to attend more conferences like this with us

44:31 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web at aiarthritis.org/talkshow or all social media platforms @IFAiArthritis

45:03 - Please consider supporting the show by donating at aiarthritis.org/talkshow

Episode 48: Support: It’s not so simple. Diverse needs for difference experiences.

Episode 48: Support: It’s not so simple. Diverse needs for difference experiences.

November 1, 2020
Join Patrice, Effie, and Rick as they share their experiences with support - which all differ per personal relationships and perspectives. That means there are different needs that we must address to help everyone. 
 
Patrice has no support from her spouse, Rick has tremendous support from his, and Effie weighs in on support needs from a single's point of view. They also talk about the needs of all others involved in our journey, as AiArthritis diseases impact every person in our lives. In turn, they too have support needs. 
 
If you are a person living with AiArthritis diseases, what's your experience with support from the various people in your life? What could be improved? What works well?  
 
Are you part of a patient's inner circle (significant other, child, parent, family member, friend, etc.)? If so, what are YOUR support needs?  What would you like to learn about supporting the person you know living with AiArthritis diseases?
 
It's time for YOU to pull up a seat "at the table" and join the conversation! Because only together can we hear all the perspectives and experiences that are required to develop solutions that matter to all. 
  • Patients and parents of juvenile patients: Sign up to join the AiArthritis Voices online community HERE. OR, if you are already a member, join Patrice, Effie, and Rick in the online community, AiArthritis Voices 360 space, to continue the conversation!
  • Are you part of a patient's "inner circle"? Are you a family member, significant other, friend - and you want to share more about YOUR needs for support? Or would you like to learn more about how you can be supportive?  You can sign up to participate in an extended version of the AiArthritis Voices community HERE
 
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune & Autoinflammatory Arthritis. Visit us on the web at https://www.aiarthritis.org/talkshow  Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org). 
 

Show Notes: Episode 48 – “Support”

 

00:53 - Patrice welcomes listeners

01:28 - Patrice is joined by Effie and Rick

02:17 -  Today’s episode is about support networks

02:43 - Patrice shares her story of living with AiArthritis without any support from her family

03:31 - Patients with AiArthritis may not be able to divorce their spouse if they rely on them financially or for health insurance

04:04 - The national divorce rate in the US is 40%, but it goes up to 75% when one spouse is chronically ill

04:25 - Women diagnosed with chronic illness are 6x more likely to be divorced than a male patient

05:00 - Patrice has built her own network of support among fellow patients since it wasn’t available from her family

05:51 - Volunteering may also provide an opportunity for patients seeking emotional satisfaction

06:19 - Rick shares his support story of being married to a supportive spouse

07:10 - For Rick, the point where he had to cease working was one of the most emotional times for he and his wife

07:59 - Rick doesn’t believe he could live without his wife’s support

09:19 - Effie shares her story of being a single individual in need of support for JIA/RA

10:24 - Loved ones of patients also need support

11:17 - AiArthritis diseases don’t just impact the person who has it, but also everyone around them

11:33  - The co-hosts discuss the issue of demonstrating grace in relationships

12:58 - Patients may feel they need to educate their children in particular since there may be genetic components to AiArthritis Diseases

13:27 - Patients may be plagued by guilt or regrets and need to forgive themselves before they can show grace to others

14:45 - Effie explains Spoon Theory

16:27 - It’s important to forgive other people for not understanding what it is like to live with a chronic illness

19:27 - Knowledge about autoimmune diseases - especially the fact that they aren’t a result of poor choices - is much more available now than it was in previous decades

20:33 - Older generations may be less likely to share about their diagnosis or ask for or offer support

22:36 - An AiArthritis diagnosis doesn’t necessarily define an individual

23:05 - It might be helpful for future generations of a family if a patient keeps a journal of their diagnosis and treatment journey so that this information and knowledge from experience isn’t lost

25:29 - Patrice thanks Effie and Rick for joining in the conversation today

25:43 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics

26:15 - Patrice thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis

26:38 - Find Rick at RADiabetes.com or on Twitter (@LawrPhil) or on Facebook

26:51 - Find Effie at RisingAboveRA.com or on Twitter and Instagram @RisingAboveRA

27:29 - Please consider supporting the show by donating @ aiarthritis.org/podcast

 
Episode 47: Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020

Episode 47: Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020

October 18, 2020

This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, for a special AiArthritis Watch Party for the announcement of the winners of the 9th Annual WEGO Health Awards. The WEGO Health Awards were created to embody the mission of WEGO Health: to empower patient leaders by recognizing their contributions to the field of healthcare. There are 16 categories of awards that this year included over 13000 nominees and 96 finalists. 

AiArthritis is thrilled to announce that we won the 2020 WEGO Health Award for Best Team Performance! We are so grateful to all of our volunteers, staff, and supporters for making this award and all of our work possible. Our mission at AiArthritis is to center the patient voice in ongoing conversations about the issues facing the AiArthritis community and to bring as many voices to the table for those conversations as we can. Whether you have been with us from the beginning or are listening to AiArthritis Voices 360 for the first time, we want you to be a member of our family because only together can we move mountains and shape the future of AiArthritis patient health. 

Now, 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 Tiffany and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect. 

 

JOIN TODAY!

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.  

Show Notes: Episode 47 – “Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020”

 

00:53 - Tiffany welcomes listeners

01:05 - AiArthritis was co-founded by Tiffany in 2011, after she started an awareness campaign to let people know that Arthritis is not just a disease for elderly people.

02:59 - We are a family, and all of our volunteers are members of that family.

04:03 - AiArthritis was 1 of 13000 nominations and 96 finalists for the WEGO Health Awards this year.

05:40 - Hear the reaction when our volunteers found out we won the WEGO Health Award for Best Team Performance.

14:51 - Tune in at AiArthritis.org/talkshow to listen to any of our previous episodes or subscribe wherever you listen to podcasts

Episode 46: The “A” Word

Episode 46: The “A” Word

October 4, 2020

This week join us for an AiArthritis Voices 360 first!  In honor of World Arthritis Day on October 12, 2020, seven of your recurring Voices 360 co-hosts come together for an essential conversation about educating the public and the medical community about the many different types of arthritis that exist, especially the key differences between Osteoarthritis and AiArthritis. Thank you to Tiffany Westrich-Robertson, Deb Constien, Rick Phillips, Effie Koliopoulos, Patrice Johnson, Suz Schrandt, and Judy Flanagan for participating in this important round table discussion.

Our organization was enlisted in 2012 by EULAR to help bring more attention on World Arthritis Day to the autoimmune/autoinflammatory diseases that also included arthritis, as they felt the day was heavily focused on OA.  Since then, we have tried to make sure on World Arthritis Day to really focus on the AUTO + Arthritis so our community is heard.

Join the co-hosts as they dig into misconceptions about arthritis, as well as how the lack of public awareness contributes to poorer quality of life for people living with AiArthritis diseases. 

  • What do you think of when you hear the word "arthritis"?
  • How have misconceptions negatively impacted your life?
  • Some push for eliminating the word arthritis from the names of certain diseases, in the hopes that the misunderstandings can be eliminated - but is that realistic?  Oh, yes, we go there. 

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. 

 

Now, 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 Tiffany and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect. 

 

JOIN TODAY!

 

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.  

Show Notes: Episode 46 – “The A Word”

 

00:53 - Tiffany welcomes listeners

01:20 - Tiffany introduces her panel of patient co-hosts - including Deb, Rick, Effie, Patrice, Suz, and Judy

03:18 - Today’s episode will address the issue of differentiating arthritis types and the loaded nature of “The A Word”

04:00 - The panelists discuss the frustrations AiArthritis patients have because the word “arthritis” is usually associated with elderly people, but most AiArthritis patients have onset when they are young

05:35 - Patients may avoid the word “arthritis” when discussing their medical issues with people because so many people have mistaken assumptions about the word

08:44 - Other patients may be careful to say “Autoimmune Arthritis” to discourage people from thinking about traditional Osteoarthritis

10:46 - Due to poor understanding of the word “arthritis,” doctors may dismiss symptoms in young people or systemic symptoms of rheumatological disease that aren’t related to joint damage

15:17 - Suz discusses the importance of early diagnosis and treatment

18:37 - Treatment for Autoimmune Arthritis diseases usually focuses on preventing joint damage, but often the other systemic symptoms are ignored completely

25:09 - Patients may feel frustrated when they have to explain the difference between osteoarthritis and autoimmune arthritis to others

25:44 - Sometimes people are reluctant to see a Rheumatologist and will only discuss their symptoms with their Primary Care Physician, who may not be able to determine if joint pain is AiArthritis or Osteoarthritis

29:05 - The Stills Disease Community has recently tried to move away from the term “arthritis” due to frustrations around inability to get accurate medical care

31:11 - There are actually over 100 different types of Arthritis, but the majority of people only understand Osteoarthritis and aren’t even aware there are other kinds

32:31 - The public seems to have a better understanding of complex features of other diseases (like diabetes and asthma) than they do about arthritis

34:42 - The Diabetes and Medical communities have spent 20+ years educating people on the complex features of Diabetes to improve patient outcomes

35:58 - Because most people will experience Osteoarthritis at some point in their lives, it is the type of arthritis that is always going to be better understood than others

38:26 - The Lupus Community does not wish to be associated with the term Arthritis, even though Autoimmune Arthritis is a clinical component of their disease

40:09 - Sometimes people fail to understand the seriousness of AiArthritis because they believe patients never die from those diseases

41:24 - The 2020 EULAR conference had many seminars on the systemic nature of AiArthritis diseases because they cause more than just joint damage

42:49 - Many patients wanted the name of their disease changed to distinguish it from arthritis which requires a united global effort of all stakeholders 

44:15 - In addition to issues with coding and research, rebranding diseases by name would consume a lot of resources that could be used for research or development of new medications

49:58 - Poor understanding of AiArthritis diseases by the public and medical community takes an emotional toll on patients who feel misunderstood and unsupported

52:36 - The invisible nature of AiArthritis diseases can also cause emotional and physical distress to patients as society places unreasonable expectations on them

54:12 - People are so uncomfortable talking about disease and death that they may inadvertently blurt out unsupportive commentary in a misguided attempt to lift someone’s spirits

59:47 - Join all of AiArthritis Voices 360 co-hosts to discuss this and other topics by visiting aiarthritis.org/aiarthritisvoices to join our new online platform which will be premiering on World Arthritis Day, October 12, 2020

Episode 45: This is for all the marbles

Episode 45: This is for all the marbles

September 20, 2020
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders so, together, we can solve problems impacting the autoimmune and autoinflammatory arthritis community.  
 
Join Tiffany Westrich-Robertson, CEO, as she explains that each person - and our associated roles - are like marbles. If each stakeholder group is a color, and only one color is in the jar, we will never develop solutions that matter to all stakeholders involved in the problem. So we are evolving the show - and our associated online AiArthritis Voices platform, which will now be available for all stakeholders who wish to participate in the ongoing conversations. 
 
Patient? Significant other? Family member? Doctor? Nurse? Researcher? Come on and join us - this is for all the marbles!  Listen to this week’s episode to find out exactly what you can do to get involved in our work!

 

PATIENTS/PARENTS OF JUVENILE PATIENTS: JOIN TODAY!

ALL OTHER STAKEHOLDERS - JOIN TODAY!

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.  

 

 

Show Notes: Episode 45 – “For All The Marbles”

 

00:53 - Tiffany welcomes listeners

02:36 - Today’s topic is an open invitation to all stakeholders in the AiArthritis community to get involved with our mission of trying to solve the most pressing issues impacting disease management and the journey of patients

04:15 - We want all the people involved in this community - not just the patients - to come to the table and help us address the issues our organization is trying to tackle

05:19 - Tiffany explains the AiArthritis logo and how it embodies the organization’s policy of bringing all voices to the table

09:46 - We need as many patient voices at the table for conversations as possible because Tiffany has not had the same experience with her disease that others may have had

11:28 - The organization and the Voices 360 show are evolving to bring more voices into the conversations

14:00  - On October 12, World Arthritis Day, the AiArthritis Voices online platform will open to all stakeholders. Previously it was only available for patients and parents of juvenile patients.

14:42 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics

15:15 - All other stakeholders can also join the AiArthritis Voices Forum by visiting aiarthritis.org/aiarthritisvoices

15:41 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis

 

 

 

 

 

 

 

 

 

 

Episode 44: Patient-Reported Symptoms - Connecting the dots to improve education

Episode 44: Patient-Reported Symptoms - Connecting the dots to improve education

September 13, 2020

This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of the organization and the AiArthritis Voices 360 Talk Show.

The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis is proud to announce the impending publication of the first-ever 100% patient-reported symptoms brochure for Stills Disease, launching on September 7th 2020 - Stills Disease Awareness Day. This project could not have been possible without the participation of patients, like you, are willing to donate your time, expertise,  and lived experiences.

 

This talk show was created to help bring more patient voices into the conversation about this and many other projects. We are very excited to transition to bimonthly episodes and incorporate the new AiArthritis Voices online platform to deepen these conversations and move more of our ongoing projects to their ultimate finish lines. We want YOU to join us at the table! Listen to this week’s episode to find out exactly how you can do that in this exciting new phase of the organization’s work.

 

Now, if you are a patient or parent of a juvenile patient - are you ready to join the conversation? It's your turn to pull up a seat! Join Tiffany and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect. 

 

JOIN TODAY!

 

Other stakeholders - are you a doctor, nurse, researcher, industry representative, or other health services person who wants to join us "at the table" too?  Then message your comments or questions about this show to podcast@aiarthritis.org OR message us on any of our social media accounts at @IFAiArthritis. 

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.  

 

Show Notes: Episode 44 – “Connecting the Dots”

 

00:53 - Tiffany welcomes listeners

01:15 - Today’s episode is about how patients sharing their experiences can begin to solve the issues facing the AiArthritis patient community

3:00 - Tiffany shares her diagnosis story

5:00 - Many patients research their symptoms online to try and solve the mystery of what is happening with their body

6:18 - Symptoms recognized by the medical community may not always be consistent with the lived experiences of patients

10:09 - AiArthritis conducted an Early Symptoms Study to identify common patient-reported symptoms of 6 AiArthritis Diseases

11:25 - AiArthritis has a unique process that seeks to solve problems thru ongoing patient conversations

12:57 - One of our projects has been to develop a Stills Disease Pamphlet thru a campaign called “My Stills”

16:06 - The first ever fully patient reported Stills Disease brochures including a comprehensive list of symptoms will be published on September 7, 2020 - Stills Disease Awareness Day

17:38 - AiArthritis plans to repeat this process for all the other AiArthritis patient communities we serve

19:11 - Voices 360 will transition to bimonthly episodes so that the organization can devote more development time to each episode to include as many stakeholders as possible and accomplish as many of our goals as possible

20:18 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritisvoices.org and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics

20:38 - View all of our projects at aiarthritis.org

22:03 - Tiffany thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis

Episode 43: Support - It’s a Family Affair

Episode 43: Support - It’s a Family Affair

August 30, 2020

This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Juana and Estela Mata, co-founders of Looms 4 Lupus, as they discuss the complicated issues surrounding supporting patients living with autoimmune and autoinflammatory arthritis diseases and their loved ones.

Looms 4 Lupus is an organization dedicated to providing an environment for education and outreach to Lupus and Fibromyalgia survivors and their family members through multiple avenues such as hands-on workshops, informational clinics, bilingual resources, and psychosomatic support groups.

On this episode, Tiffany, Juana, and Estela talk about the need for support for AiArthritis patients from their inner circle of family and friends, as well as the support needs of people who have a loved one with a chronic illness. They discuss the importance of open communication in receiving and providing support and the need for raising global awareness for AiArthritis diseases so that friends and family members of people living with these diseases can better understand their loved ones needs and limitations.

The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. One of the most persistent problems facing patients is a lack of understanding by the rest of the world. Too often people who are suffering are dismissed, ignored, or belittled because their family members, friends, or doctors do not recognize the symptoms of their disease. You can be a part of helping us change that. We need you to share your story.

Now, if you are a patient or parent of a juvenile patient - are you ready to join the conversation? It's your turn to pull up a seat! Join Tiffany, Juana, Estela, and all the other Voices 360 co-hosts to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect. 

 

JOIN TODAY!

 

Other stakeholders - are you a doctor, nurse, researcher, industry representative, or other health services person who wants to join us "at the table" too?  Then message your comments or questions about this show to podcast@aiarthritis.org OR message us on any of our social media accounts at @IFAiArthritis. 

 

 

 

AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on twitter, instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.  

 

 

Show Notes: Episode 43 – “Support - It’s a Family Affair”

 

00:53 - Tiffany welcomes listeners

01:30 - Tiffany is joined today by Estela and Juana Mata, co-founders of Looms 4 Lupus

2:40 - Today’s topic is support for loved ones who are AiArthritis patients

2:47 - Tiffany explains the way the talkshow and the AiArthritis organization approaches projects to help improve the lives of AiArthritis patients

4:18 - Estela and Juana discuss their experience as a family supporting Juana’s battle with Lupus and co-morbidities

5:48 - Family members of AiArthritis patients also require support

9:43 - Support may look very different from one family to the next or even among different members of the same family

13:57 - Family members may need assistance to find the best way to help and support their loved one living with an AiArthritis disease

16:30 - Diagnoses that are more familiar to people like cancer tend to illicit immediate support because people may feel more empathy for conditions they understand

18:18 - AiArthritis patients may face judgment from others because people don’t understand their disease or their limitations

19:01 - Patients sometimes feel pressure to be performative with their illness so that their inner circle will be more supportive

22:52 - Communication between the patient and the family is critical to establishing adequate support

31:24 - It may be more difficult for male patients to ask for or accept the help they need from their loved ones

32:28 - Counseling and support groups can be very beneficial in helping families navigate figuring out how to support each other effectively

35:39 - To share your story on this topic, visit our website at aiarthritis.org/podcast

35:51 - If you are living with an AiArthritis disease, check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts

36:28 - You can also find Estela and Juana @looms4lupus on all social media platforms or by visiting their website at looms4lupus.org

37:27 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org

Episode 42: Treat to Target Today with Complex Diseases - Is it Possible?

Episode 42: Treat to Target Today with Complex Diseases - Is it Possible?

August 23, 2020

Join TIffany and Rick as they address the challenges involved as Treat 2 Target has emerged from aggressive treatments for a larger population to treating per the individual and based on the complexity of each disease. 

 

Now, if you are a patient or parent of a juvenile patient - are you ready to join the conversation? It's your turn to pull up a seat! Join Tiffany and Patrice to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect. 
 
 
Other stakeholders - are you a doctor, nurse, researcher, industry representative, or other health services person who wants to join us "at the table", too?  Then message your comments or questions about this show to podcast@aiarthritis.org OR message us on any of our social media accounts at @IFAiArthritis. 
 
 
AiArthritis Voices 360 is the official talk show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). You can find us on the web at www.aiarthritis.org

 

Show Notes: Episode 42 – “Treat to Target Today with Complex Diseases - Is it possible?”

 

00:53 - Tiffany welcomes listeners

01:22 - Tiffany introduces Rick, a fellow patient who has Ankylosing Spondylitis and attended a virtual EULAR conference with Tiffany

3:00 - Rick really enjoyed the opportunity to participate in EULAR virtually since he might not have had the opportunity to attend in person otherwise

03:44 - Rick and Tiffany both attended a hot topic session at EULAR called Treat to Target in AxSpa:  Myth or Reality?

04:49 - Tiffany and Rick explain the history of “Treat to Target” as a research initiative within the realm of AiArthritis Disease research

10:22 - Tiffany and Rick share key takeaway points that they learned during the Treat to Target session

16:34 - The study presented in the session had some problems in its design that may have impacted the quality of the results

19:58 - Rick discusses his appreciation for the researchers’ ability to recognize and address the limitations of their own study

21:56 - With “Treat to Target” doctors were given specific criteria for treatment and followed up with patients every 4 weeks whereas the “Usual Care” group included doctors who treated their patients however they wanted to treat them and followed up every 3 months. Doctors within the Usual Care group may have been AxSpa experts who were using the same treatments as the other group.

23:24 - Rick discusses the experience of patients who are never even treated by a rheumatologist

25:49 - Tiffany gives an overview of the second portion of the seminar which covered controversies and myths in Treat to Target discussions

28:46 - Accurate disease diagnosis and identification of co-morbidities is essential to implement a treat to target strategy

29:03 - Remission and removal of treatments is the ultimate goal of treat to target strategies, which is a relatively novel goal in rheumatology, but early diagnosis and aggressive treatment is usually necessary to achieve remission

30:26 - The target of treatment may change over time as co-morbidities develop, as the disease progresses or as treatment becomes more effective

32:06 - The second study presented in the seminar lasted 12 years, and researchers had a difficult time keeping participants enrolled in the study for the full duration

36:07 - Forms that patients fill out at rheumatology appointments to measure disease activity are important for clinical researchers, yet doctors are not implementing these forms correctly (or at all) so researchers aren’t able to collect the data they need

41:55 - Numeric pain scales may not be the best way to track AiArthritis pain as a disease management tool

46:34 - It is important to ensure that patient data collection forms are never used by private health insurance companies or public health officials to penalize rheumatologists for the quality of service they are providing to their patients as that is not the purpose of those forms

48:10 - The ideal goal of treat to target is precision medicine

48:30 - The lack of definitive diagnostic measurements like bloodwork or imagine with AxSpa complicates any treatment and research

50:01 - Tiffany thanks Rick for co-hosting this episode

50:12 - Rick is a contributor to rheumatoidarthritis.net, ankylosingspondylitis.net, and radiabetes.com

50:51 - Check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts

51:38 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org

Episode 41: Biomarkers - DIagnosis, Disease Management, & even PREVENTION?!

Episode 41: Biomarkers - DIagnosis, Disease Management, & even PREVENTION?!

August 16, 2020
This week, Tiffany and Patrice discuss the importance of biomarkers. Do biomarkers hold the key to understanding disease severity and predicting disease onset?
 
In this episode, we talk about biomarkers, or a measurable indicator present in the blood or tissues, and how their presence in our bodies can predict disease severity and guide treatment development. Furthermore, evidence that identifying biomarkers early - BEFORE DISEASE ONSET - could actually prevent a person from developing the disease.  Now, there is still the environmental plus genetic factors to consider, but the findings are promising. 
 
While the research focuses on Rheumatoid Arthritis (RA), showing how those who are sero-positive - in addition to having other genetic biomarkers - have a higher likelihood of developing severe disease and bone erosion,  Tiffany points out this is similar to Axial Spondyloarthritis, where many of those with non-radiographic disease do not have the biologic HLA-B27 gene that is present in most with radiographic evidence.  
 
The bottom line is that learning about biomarkers can help patients navigate their own healthcare journey, but also could possibly prevent their loved ones from developing these diseases in the future. 
 
Now, if you are a patient or parent of a juvenile patient - are you ready to join the conversation? It's your turn to pull up a seat! Join Tiffany and Patrice to continue this conversation inside our new, coordinating AiArthritis Voices ONLINE COMMUNITY - where patients unite with others around the world to talk, learn, and connect. 
 
 
Other stakeholders - are you a doctor, nurse, researcher, industry representative, or other health services person who wants to join us "at the table", too?  Then message your comments or questions about this show to podcast@aiarthritis.org OR message us on any of our social media accounts at @IFAiArthritis. 
 
 
 
AiArthritis Voices 360 is the official talk show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). You can find us on the web at www.aiarthritis.org
Episode 40 Research at a Glance - Posters & Abstracts: Patient reviewers, here we come!

Episode 40 Research at a Glance - Posters & Abstracts: Patient reviewers, here we come!

August 9, 2020

Today Tiffany talks about Posters & Abstracts, or summaries of research, thousands published annually just within the rheumatology community. So, unless the poster is featured in a session, attendees must search the poster database to learn about recent, current, or ongoing research that may be of importance to know.

As we continue our tour of the EULAR scientific conference*, we are inviting patients from around the world to join our team in patient-led Poster/Abstract research reviews. During today's show, Tiffany simulates the simplicity of viewing this short research summary and the value associated with patients (and patient organizations) who are privy about current research efforts.

Poster/Abstract selected for review: Evolving the Management of RA (eRA) program: Educational tools to support daily practice (of rheumatologists)

Listen to the episode to hear the review and to get involved with AiArthritis in expanding research within the patient community!

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*Since June, our team has been learning from the research presented at the European League Against Rheumatism (EULAR) 2020 annual scientific e-Congress ... and we are inviting those diagnosed with our diseases - and parents of juvenile patients - to join us!  Live and online research reviews, watch parties, and more. Sign up today by joining https://aiarthritisvoices.org  or learn more at https://www.aiarthritis.org/go-with-us-to-eular-2020

 

To learn about RheumyRounds, the break out pilot series for this Talk Show that unites the patient and rheumatology professional "at the table" as equals in conversations that solve problems to improve communication and community outcomes. Want to get involved with RheumyRounds? Learn more at https://www.aiarthritis.org/rheumyrounds

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AiArthritis Voices 360 is the official Talk Show of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). Our mission to help others, like us, affected by AiArthritis diseases, have a voice alongside other stakeholders as equals, so together we can solve the problems that impact education, advocacy, and research. 

 

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