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Kristine's Journey: Resilience, Rare Diagnoses, and Empowering Community
Manage episode 426456917 series 3407225
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Can you imagine going from running marathons to fighting for a diagnosis that doctors initially dismissed as stress? Kristine has lived this journey, and she shares it with us in a gripping conversation about her struggle with chronic illness and rare diagnoses. From the first strange tweak in her foot to the emotional toll of being invalidated by medical professionals, Kristine's story is one of resilience and the critical importance of having an advocate in the healthcare system. Her mother-in-law, a doctor, provided the support Kristine needed to document her symptoms meticulously, finally making the medical community listen.
Her experience shows that sometimes, the most significant support we can offer is not trying to fix things but just listening and connecting through shared invisible struggles.
We also explore Rare's offerings, from custom t-shirts and stickers to the innovative treatment-accessible sweatshirt. Kristine highlights the importance of size inclusivity and comfort, ensuring that everyone can find something meaningful in her brand. Beyond clothing, Rare's mission extends to mental health support through moderated groups on the Cabana platform, particularly for underserved communities. Kristine's insights into creating judgment-free spaces for those battling chronic illnesses underline the episode's overarching message: turning personal challenges into a beacon of hope and connection for others.
All links: RARE. Link Tree | Linktree
Shope RARE: RARE. (findyourrare.com)
Grab your FREE Cabana membership here: Cabana and Rare Disease Community Collaboration (Page 1 of 5) (office.com)
You're Always Fine Pod: You're always fine (yourealwaysfinepod.com)
Her experience shows that sometimes, the most significant support we can offer is not trying to fix things but just listening and connecting through shared invisible struggles.
We also explore Rare's offerings, from custom t-shirts and stickers to the innovative treatment-accessible sweatshirt. Kristine highlights the importance of size inclusivity and comfort, ensuring that everyone can find something meaningful in her brand. Beyond clothing, Rare's mission extends to mental health support through moderated groups on the Cabana platform, particularly for underserved communities. Kristine's insights into creating judgment-free spaces for those battling chronic illnesses underline the episode's overarching message: turning personal challenges into a beacon of hope and connection for others.
All links: RARE. Link Tree | Linktree
Shope RARE: RARE. (findyourrare.com)
Grab your FREE Cabana membership here: Cabana and Rare Disease Community Collaboration (Page 1 of 5) (office.com)
You're Always Fine Pod: You're always fine (yourealwaysfinepod.com)
Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.
Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/
Capíttulos
1. Navigating Chronic Illness and Rare Diagnoses (00:00:00)
2. Empathy and Connection in Chronic Illness (00:13:09)
3. Apparel Brand With Purpose (00:23:33)
4. Expanding Access to Mental Health Platforms (00:32:32)
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