Episode 90: Why Won’t They Diagnose Me?

At AiArthritis, we represent those diagnosed, their care partners/support network, and the undiagnosed (often called the “Mystery Patients”). This episode is for those struggling to get diagnosed. Join co-hosts Tiffany, Kerry and Danielle as they share their personal diagnosis struggles and delve deep into the challenges many other patients face on their diagnosis journey. From navigating initial symptoms to facing dismissive healthcare providers due to 'normal' blood work, we're talking about common hurdles that delay diagnosis, then encouraging YOU to share your experiences and perspectives as well. Together, we will create a Patient-Led Guide to an AiArthritis Disease Diagnosis.  

 

There are life-altering consequences of not getting diagnosed early, including decreasing chances to achieve remission and increasing the likelihood of comorbidities (such as multiple AiArthritis and related diseases, heart disease, and even Alzheimer’s and dementia). The guide we create will help the undiagnosed recognize signs their diagnosis journey may be getting derailed and understand crucial questions to ask health professionals during pivotal visits. 

 

Share your story to help create a patient-led guide: https://bit.ly/undiagnosedadvice

 

Episode Highlights: 

• Explore the common struggles patients face while seeking a diagnosis, including being dismissed by doctors and misinterpreting 'normal' blood work.
• Hear unique stories from Danielle, Kerry, and Tiffany, revealing the emotional and physical toll of diagnosis delays.
• Discover how delayed diagnoses can lead to irreversible damage and additional health complications.
• Learn the value of patient advocacy and the importance of asking the right questions during doctor visits.
• Help us complete our initial Patient-Led Guide to an AiArthritis Disease Diagnosis! https://bit.ly/undiagnosedadvice

Meet Our Co-Hosts:

• Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.

Connect with Tiffany:

• Facebook: @tiffanyAiArthritis
• Twitter: @TiffWRobertson
• LinkedIn: @TiffanyWestrichRobertson

 

• Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories. 

Connect with Kerry:

    Instagram: @buttahflyk 

    Twitter: @buttahflyk 

    Facebook: @floatlikeabuttahfly 

    Website: http://bit.ly/floatlikeabuttahfly

 

• Danielle is a career educator, wife, and mother of 3. She was diagnosed with Rheumatoid Arthritis and Primary Biliary Cholangitis after years of unproductive medical investigation. She is dedicated to educating fellow AiArthritis patients about the importance of liver health and metabolic testing. In her spare time, she also co-hosts a podcast with her husband and 10 year old daughter about the importance of film history for the next generation.

Connect with Danielle:

    Website: https://www.omnibusride.com/

    Email: 1in20000special@gmail.com

 

Donate to Support the Show: https://www.aiarthritis.org/donate 

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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).  Be sure to check out our top-rated show on Feedspot!