In this episode, we are featuring Alanna Yee.
The onset of autoimmune encephalitis and the frustrations leading to her diagnosis would change her life in ways she never could have imagined. These experiences inspired Alanna to begin sharing her own story to help others navigate similar challenges.
Alanna generously shares her insights on how to effectively tell personal health stories. She guides us on where to begin, how to strike a balance, and how to respect our own privacy when sharing such personal narratives. Her perspective on the therapeutic value of sharing patient experiences and its potential to drive progress for rare diseases is truly enlightening.
ABOUT US:
The Demystifying NMO and MOG podcast is a Sumaira Foundation (TSF) project and
was made possible with the generous support of Genentech.
SOCIAL & WEBSITE:
Alanna Yee
Facebook - / wherearemypillows
Instagram - wherearemypillows
Twitter - wampillows
Demystifying NMO podcast
Instagram - demystifying_nmomog
Twitter - DemystifyingNMO
The Sumaira Foundation
Website - www.sumairafoundation.org
Facebook - TheSumairaFoundation
Voices of NMO & MOG - www.sumairafoundation.org/awareness/voices-of-nmo/
TIMESTAMPS/TOPICS:
00:01:27 Alanna Yee
00:08:08 How To Start Sharing Our Experiences
00:11:45 More Than Words, Other Ways To Tell Our Stories
00:16:11 Facts & Emotions
00:23:53 Authenticity And Privacy
00:29:41 Advice For People Considering Sharing Their Health Stories
ADDITIONAL LINKS
The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients from Science Magazine, a peer-reviewed academic journal by the American Association for the Advancement of Science. t.ly/Llg1U
SUPPORT THE PODCAST
Donate to Illuminate
www.sumairafoundation.org/adv...
CREDITS:
Producer & Host - Brian Dawson
Music - Denys Kyshchuk from Pixabay
28 май 2024
