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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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).

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