97. Learning to Spot the Signs of Ehlers-Danlos Syndromes with Guest Host, Kate Colbert

In this special “EDS Awareness Month” episode of the Bendy Bodies Podcast, founder Dr. Linda Bluestein and guest host Kate Colbert discuss how everyone can learn to spot the signs of

Ehlers-Danlos Syndromes.

Dr. Bluestein emphasizes the importance of EDS awareness, as many people are still not getting the evaluations and care they need.  She also debunks several myths about EDS, including the misconception that EDS does not cause pain and that only geneticists can diagnose it. She emphasizes the importance of early intervention and appropriate treatment for better patient outcomes. 

They cover the importance of understanding Mast Cell Activation Syndrome (MCAS), the challenges faced by individuals with EDS in their relationships, and how to communicate with romantic partners and family members. 

Colbert and Dr. Bluestein also discuss the impact of EDS in the workplace and provide tips for employers and coworkers to support individuals with EDS. The conversation emphasizes the need for awareness, empathy, and support for individuals with EDS and other poorly recognized conditions.

Takeaways

• EDS Awareness Month is an opportunity to educate and spread awareness about Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorders (HSD), and associated conditions.
• Healthcare professionals should listen to their patients and believe them, even if a clear diagnosis is not yet established.
• Teachers, daycare providers, and nannies can play a crucial role in identifying hypermobility conditions in children. 
• Coaches and athletic instructors should be aware of the signs of EDS in athletes and dancers and provide resources for further evaluation and support.
• Several myths about EDS, such as the misconception that EDS does not cause pain and that only geneticists can diagnose it, should be debunked.
• Early intervention and appropriate treatment are crucial for better patient outcomes. 
• Mast Cell Activation Syndrome (MCAS) is an important condition to consider in individuals with environmental sensitivities, even if their tryptase levels are not elevated.
• Understanding and empathy are crucial in relationships where a partner has EDS or HSD, as the condition can cause dynamic disability and varying needs.
• Communication is key in relationships, and using mirroring techniques and talking boundaries can help improve understanding and compassion.
• Employers and coworkers should show support and offer accommodations to individuals with EDS, such as checking in with them, providing grace, and making the workplace more accessible.
• Increasing awareness about EDS and related conditions is essential to foster empathy, support, and better partnerships in healthcare, workplaces, and society.

Chapters ➡

00:00 Introduction and EDS Awareness Month

09:30 Identifying Hypermobility Conditions in Children

31:06 Early Intervention and Appropriate Treatment

42:04 Supporting Individuals with EDS in the Workplace

54:59 The Importance of Awareness and Empathy for EDS and Related Conditions

Connect with YOUR Bendy 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.🎧

Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/.      

YOUR bendy body is our highest priority! 🧬🔬🦓

Resources:

https://www.ehlers-danlos.com/

https://iadms.org/

https://www.edsguardians.org/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10328215/

https://pubmed.ncbi.nlm.nih.gov/34524722/

#EDSAwarenessMonth #EDSAwareness #EhlersDanlosMyths #HSD #MCAS 

#Hypermobility #Podcast #BendyBodiesPodcast #BendyBuddy #HypermobilityMD