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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 May 03, 2020
Sunday May 03, 2020
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Pooja Panchamia, founder of the website and online community FieryBones, as they discuss the need for raising global awareness for autoimmune and autoinflammatory arthritis diseases.
FieryBones is a website dedicated to connecting people around the world suffering from autoimmune arthritis and helping them find hope, information, and inspiration. Pooja created it after her Rheumatoid Arthritis diagnosis left her feeling isolated and afraid of what the future would hold. Support groups were not available in India due to a cultural stigma associated with speaking publicly about illness, so Pooja decided to build her own support network.
She and Tiffany talk about the problems patients everywhere face as a result of a lack of awareness of autoimmune and autoinflammatory arthritis diseases. They delve into the benefits that can be gained from online support communities for patients and caregivers. They also discuss how patients can make an important difference, both in management of their own health and in raising global awareness by speaking up.
AiArthritis will soon be celebrating World AiArthritis Day by hosting our AUTO Ball Online! This is one way patients everywhere can get involved in our mission to raise global awareness for AiArthritis diseases. We need you to share your story. 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.
So tune in, listen, and then visit www.aiarthritis.org/autoball to share your story today!
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 26 – “Global Awareness”
00:52 - Tiffany welcomes listeners to today’s episode
1:11 - Tiffany is a patient living with non-radiographic axial spondyloarthritis
1:35 - Tiffany welcomes today's co-host, Pooja Panchamia
2:02 - Pooja introduces herself and explains her website, Fiery Bones
3:49 - Today’s topic is the need for global awareness for autoimmune and autoinflammatory arthritis diagnoses
4:14 - The AiArthritis Voices 360 Podcast’s mission is intertwined with the mission of the AiArthritis mission to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community
5:48 - Raising awareness of aiarthritis diseases is critically important because a lack of awareness of these diseases can lead to lack of detection, delayed diagnoses, elevated healthcare costs, relationship conflicts, internal struggles, and poorer patient outcomes
6:30 - Lack of awareness of aiarthritis diseases can cause relationships to suffer because friends or family members do not understand the difference between tired and fatigued
8:45 - Patients find it frustrating when others try to offer advice on how to manage their illness, which they probably would not do if they were well educated on the nature of autoimmune and autoinflammatory diseases
12:36 - One of the reasons for this lack of awareness is that most people associate the term arthritis with osteoarthritis
13:20 - Most people assume arthritis is something you experience during old age
14:00 - Pooja was told that her symptoms were probably diet related or possibly psychosomatic, which is a very similar experience many other patients have reported
15:09 - Pooja realized her low-grade fevers were connected to RA after she was diagnosed, but no doctor ever pointed it out
15:32 - Fortunately Pooja’s RA was diagnosed fairly quickly by a doctor because she had traditional symmetrical presentation, which is unique to RA
17:08 - Pooja founded Fiery Bones out of a desire to understand her own illness better and how it would impact her life and future
17:55 - Hearing other people’s similar stories can make patients feel better and less isolated because you realize that you are not alone
18:52 - Patients who share their stories with Fiery Bones often want others to understand the unpredictable nature of their illness
20:36 - Another recurring theme in the patient stories was being dismissed by doctors and having delayed diagnosis
22:02 - One important lesson Pooja learned from collecting patient stories was to let go of any guilt about what you cannot do
22:36 - Another lesson was that patients must communicate effectively about their illness with their family, friends, and healthcare providers
25:50 - In India, there is significant stigma associated with speaking publicly about chronic illness or health conditions, so when Pooja was diagnosed there were no support groups or anything to make her feel like she wasn’t alone
29:52 - Patients living in rural areas of India may have significant difficulty getting access to a rheumatologist
32:00 - Some patients benefit from online support networks because it gives them a sense of community and more resources for managing your own illness
32:41 - Online communities can be very helpful to caretakers as well because it can help them to better understand what their loved one is experiencing
33:26 - Virtual support groups can also help patients learn more about their own illness
39:27 - AiArthritis and Fiery Bones want all patients to share their stories to increase global awareness of autoimmune and autoinflammatory arthritis diseases
40:23 - Pooja invites listeners to visit Fiery Bones at www.fierybones.com or on Twitter @fierybones
40:49 - Listeners can also connect via the AiArthritis website @ www.aiarthritis.org/podcast
41:43 - Tiffany invites all listeners to attend the virtual AUTO Ball Online May 16th-20th on Facebook @IFAiArthrits to celebrate World AiArthritis Day
43:12 - You can register for the AUTO Ball at https://www.aiarthritis.org/autoball and share your story
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