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My Spoonie Sisters - Rheum Champions Tell All ACR 2024

Rheum Champions Tell All ACR 2024

03/17/25 • 38 min

My Spoonie Sisters

Uncover the power of advocacy and community in rheumatology as we welcome our empowering guests, Jennifer Weaver and Cheryl Crow. Jennifer, a dedicated patient leader, and Cheryl, an occupational therapist and founder of Arthritis Life, open up about their journeys as Rheum Champions at the ACR Convergence 2024. With a promise of insight and inspiration, we navigate the intricacies of large conferences, including the importance of patient voices at the table and the small yet significant moments that define their experiences.
Balancing the realities of healthcare challenges with triumphs, our conversation shifts to the heart of patient advocacy. Dive into the emotional, and at times, hopeful connections formed between patient advocates and medical professionals. Cheryl and Jennifer share personal stories on navigating sleep hygiene, the subtle pressures of defining "normal," and the importance of sensitivity in language. Through these reflections, we emphasize a broader understanding and embrace of diverse health experiences.
Explore the intricate world of rheumatology and the complexities of comorbidities like POTS, long COVID, and rheumatoid arthritis. We also shine a light on recent advancements in lupus treatment and managing chronic pain with "positive activity scheduling." Our discussion concludes with an homage to the supportive sisterhood that empowers us, urging listeners to connect with organizations like the Dysautonomia Association and Creaky Joints. As we wrap up, we celebrate the strength found in shared experiences and encourage you to stay engaged for future episodes.

Jen: Rheum Champions - The Rheumatology Lab https://www.instagram.com/gracefully_jen/?__pwa=1

Welcome to Gracefully Jen | Instagram, Facebook, TikTok | Linktree

Cheryl: Rheum Champions - The Rheumatology Labhttps://www.instagram.com/arthritis_life_cheryl/
https://thoughtful-experimenter-636.ck.page/1fb879479c

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

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Uncover the power of advocacy and community in rheumatology as we welcome our empowering guests, Jennifer Weaver and Cheryl Crow. Jennifer, a dedicated patient leader, and Cheryl, an occupational therapist and founder of Arthritis Life, open up about their journeys as Rheum Champions at the ACR Convergence 2024. With a promise of insight and inspiration, we navigate the intricacies of large conferences, including the importance of patient voices at the table and the small yet significant moments that define their experiences.
Balancing the realities of healthcare challenges with triumphs, our conversation shifts to the heart of patient advocacy. Dive into the emotional, and at times, hopeful connections formed between patient advocates and medical professionals. Cheryl and Jennifer share personal stories on navigating sleep hygiene, the subtle pressures of defining "normal," and the importance of sensitivity in language. Through these reflections, we emphasize a broader understanding and embrace of diverse health experiences.
Explore the intricate world of rheumatology and the complexities of comorbidities like POTS, long COVID, and rheumatoid arthritis. We also shine a light on recent advancements in lupus treatment and managing chronic pain with "positive activity scheduling." Our discussion concludes with an homage to the supportive sisterhood that empowers us, urging listeners to connect with organizations like the Dysautonomia Association and Creaky Joints. As we wrap up, we celebrate the strength found in shared experiences and encourage you to stay engaged for future episodes.

Jen: Rheum Champions - The Rheumatology Lab https://www.instagram.com/gracefully_jen/?__pwa=1

Welcome to Gracefully Jen | Instagram, Facebook, TikTok | Linktree

Cheryl: Rheum Champions - The Rheumatology Labhttps://www.instagram.com/arthritis_life_cheryl/
https://thoughtful-experimenter-636.ck.page/1fb879479c

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Previous Episode

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Guava Your App to Health Tracking

Have you ever felt unheard or dismissed in a doctor's office? Join us as we navigate through the deeply personal health journeys of Isabel and Emily, part of the founding team of Guava Health, who share their compelling stories of battling complex medical challenges and the frustrating experience of not being believed by healthcare professionals. These stories aren't just about struggle—they're the catalyst for innovation at Guava Health, a personal health app designed to change the way we manage our health data. Along with Megan and Jenny, our Spoonie Sisters, we explore how these insights are reshaping healthcare experiences for countless others.
Discover how Guava Health is revolutionizing personal health management with its intuitive platform that brings together every aspect of your health data. More than just a tool, it's a powerful ally that helps you communicate effectively with your healthcare providers. From tracking symptoms and medication reminders to integrating fitness and wellness data, Guava ensures that users can present comprehensive health information, enabling more informed and efficient care. With the introduction of GuavaTags, effortless tracking of daily activities like medication intake becomes a reality, marrying the convenience of technology with the necessity of health advocacy.
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Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

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Epilepsy Beyond the Ordinary

What happens when ordinary deja vu becomes something far more complex? In honor of Epilepsy Awareness Day, join us as we uncover Emma's extraordinary journey with epilepsy, a condition she was unexpectedly diagnosed with at the age of 23. Her story is a testament to resilience as she navigates through the labyrinth of symptoms and misdiagnoses, revealing the often-overlooked intricacies of living with epilepsy. Emma's candid recount of a pivotal episode in Sri Lanka and her subsequent advocacy work offers a compelling look at the need for greater awareness and understanding of neurological conditions.
Emma's experiences paint a vivid picture of the emotional terrain that accompanies chronic illness. The gap between personal reality and public perception is stark, where "I'm fine" often masks a complex struggle. This conversation sheds light on the critical need for empathy and a deeper understanding of those living with chronic conditions. By sharing her personal experiences, Emma hopes to bridge the disconnect, offering insights into the hidden battles that many face and the importance of fostering a supportive community.
Art becomes a beacon of healing and expression for Emma, transforming her journey with epilepsy into a creative force. Her venture into illustration and storytelling is not only a means of personal acceptance but also a way to connect with others facing similar challenges. Through her work and collaborations like "Beyond the Ordinary," Emma champions resilience and neurodiversity, highlighting the profound impact of creativity as a tool for coping and building community. Tune in to explore how personal struggles can redefine success and lead to a powerful story of growth and empathy.

https://linktr.ee/byemmadearling

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website:
https://myspooniesisters.com/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

My Spoonie Sisters - Rheum Champions Tell All ACR 2024

Transcript

Speaker 1

Welcome back to another episode of my Spoonie Sisters . I'm your co-host , andy , and today we have an incredibly exciting episode for you . We're diving into the heart of rheumatology advocacy , research and empowerment with two remarkable guests Jennifer Weaver and Cheryl Crow . Jen , our beautiful host , is a passionate patient , leader and advocate , dedicated to shining a light on l

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