In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with two brilliant young researchers, Jeevan Mann and Delaney Kenney, about their groundbreaking work in Ehlers-Danlos Syndromes (EDS). Jeevan shares insights into using 3D skin models for understanding hypermobile EDS, while Delaney discusses her biorepository project and the hope for future treatments. They also share personal experiences navigating life with chronic illness, the importance of advocating for accommodations, and the role of community in supporting those with EDS. This inspiring conversation highlights the innovative research that could transform EDS care and diagnosis.
Takeaways:
3D Skin Models Transform Research: Jeevan explains how 3D skin equivalents provide a scalable and cost-effective way to study hypermobile EDS, enabling more replicates and faster results compared to mouse models.
Hope for a Future Without EDS: Delaney highlights how working at the Gates Institute introduced her to the possibility of treatments that could manage or eliminate EDS symptoms in the future.
Importance of Awareness: Both guests emphasize the need for broader education and awareness of EDS among medical professionals to reduce diagnosis delays and improve care.
Advocacy Makes a Difference: Advocating for oneself and seeking accommodations, even when it’s difficult, can significantly improve the quality of life for those with chronic illnesses.
Community Provides Strength: Connecting with others who share similar experiences, as well as learning from diverse approaches within the EDS community, fosters resilience and innovation.
Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.
Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.
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Learn about Jeevan Mann and Delaney Kenney
Instagram: @jeevanmann03 & @delaney_kenney
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