99. From News Anchor to Advocate: A POTS and EDS Journey with Summer Dashe

Bendy Bodies with Dr. Linda Bluestein

Summer Dashe, a former news anchor and advocate for the chronically ill, shares her POTS and EDS journey. She covers how she manages her symptoms in everyday life and the challenges of getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome). #dysautonomia #ChronicIllness #POTSAwareness

Takeaways

• Getting a POTS diagnosis can be challenging, and it often takes multiple visits to different doctors before receiving a proper diagnosis.
• Awareness about POTS among doctors has improved over the years, but there is still a need for more education and understanding.
• Finding supportive coworkers and a job that accommodates your symptoms is crucial for managing a chronic illness in the workplace.
• Open and honest communication is key when asking for accommodations, and providing informed reasoning behind the request can help employers understand the need.
• Remote work has opened up opportunities for individuals with chronic illnesses, allowing them to work in a way that suits their symptoms and abilities.
• Managing the unpredictability of POTS requires self-compassion and finding strategies that work for you, even if it may not always feel graceful. Know your limits and make decisions based on your boundaries to remain reliable in work and personal life.
• Accepting a lifelong condition can be challenging, but it allows for a more realistic approach to treatment.
• Genetic research and advancements in technology provide hope for future awareness, treatment, and potentially a cure.
• It's important to be honest and transparent about the realities of chronic illnesses to better prepare patients for their journey. Technology played a crucial role in Summer's car accident, with her Apple Watch automatically calling 911 and alerting her emergency contacts.
• The support and care from family, friends, and coworkers were instrumental in helping Summer through the aftermath of the accident.
• Summer's experience highlights the importance of valuing oneself and advocating for accommodations in the workplace and she shares her favorite hypermobility hack.

Chapters ➡

00:00 Introduction and Background

08:01 Supportive Coworkers and Accommodations

16:01 Benefits of Remote Work

32:09 The Impact of Ehlers-Danlos Syndrome on Treatment Approach

42:25 Hope for the Future: Advances in Awareness, Treatment, and Cure

49:39 The Role of Technology in a Car Accident

56:11 The Support System: Family, Friends, and Coworkers

01:06:31 Valuing Oneself and Advocating in the Workplace

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:

Learn more about Summer Dashe

https://www.summerdashe.com/

#SummerDashe #dysautonomia #ChronicIllness #POTsie #POTSAwareness #ZebraWarriors #ZebraStrong #POTS #EhlersDanlos #Podcast

#BendyBodiesPodcast #BendyBuddy #HypermobilityMD

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