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May 30, 2024
Milestones and Reflections: 100 Episodes of Bendy Bodies with Linda Bluestein, MD
Season 4
Advocacy & Communication
Connnective Tissue Disorder
Hypermobility Life Hacks
Hypermobility Life Stages
Medical
Misdiagnosis
Pain Management
Symptoms
Dr. Linda Bluestein celebrates 100 episodes of Bendy Bodies discussing the most rewarding part of hosting the podcast and the challenges of podcasting. She emphasizes the importance of balancing the complexity of EDS and the need for healthcare professionals to understand and empathize with the struggles of patients with hypermobility conditions. Dr. Bluestein discusses the symptom burden experienced by individuals with EDS and the challenges they face in getting their symptoms understood and validated by healthcare professionals. She shares her approach to treatment as well as the top three concerns among EDS patients. Dr. Linda Bluestein and guest host Kate Colbert discuss the importance of effective communication between doctors and patients, and the need for healthcare professionals to understand the patient's perspective. Dr. Bluestein shares her goals for the Bendy Bodies podcast and they end with a hypermobility hack for traveling with EDS.
Takeaways
- Healthcare professionals should strive to understand and empathize with the struggles of patients with hypermobility conditions and recognize their heroic efforts in managing their symptoms.
- Offering the correct dose of hope is difficult, as it is important to be responsible and not oversimplify the complexities of hypermobility conditions.
- Individuals with EDS often experience a high symptom burden, including pain, fatigue, and gastrointestinal symptoms.
- Getting symptoms understood and validated by healthcare professionals can be challenging for EDS patients.
- Empathy and understanding from both patients and doctors are crucial in managing EDS symptoms.
- Treatment approaches for EDS are discussed.
- Effective communication between doctors and patients is essential for better care. Patients can learn how to communicate better and doctors can understand how patients think.
- The Bendy Bodies podcast aims to improve care for people with symptomatic joint hypermobility, educate healthcare professionals, and support nonprofit organizations.
- Patients, caregivers, advocates, and medical professionals can contribute to the EDS community by representing it well, sharing their stories, and spreading awareness about the podcast.
Chapters ➡
00:00 Introduction and Celebration of 100 Episodes
25:52 Understanding and Empathizing with Patients' Struggles
36:40 The Top Three Concerns Among EDS Patients
41:20 The Most Effective Treatment Approaches for EDS
44:23 The Role of Mast Cell Activation Syndrome (MCAS)
52:12 How an EDS Doctor can Facilitate a Patient's Healthcare Team
01:03:16 The Future and Goals of the Bendy Bodies Podcast: Improving Care and Spreading Awareness
1:05:21 Improving Quality of Care for Everyone
01:14:05 Hypermobility Hack: Packing Heavy and Lightening the Burden on Your Body
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.sciencedirect.com/science/article/abs/pii/S0161589014000546
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Kate Colbert
EDS Advocate, Author, Marketer, Communications Coach, Entrepreneur
Kate Colbert is the founder, executive director, and board president of EDS Guardians, Inc., the world’s first patient-to-patient, caregiver-to-caregiver, “pay-it-forward” organization dedicated to helping Ehlers-Danlos Syndromes (EDS) patients who lack support and need vital medical treatment, community, and compassionate care. Running EDS Guardians is a 100% volunteer effort that Kate has taken on in addition to her roles as CEO of Silver Tree Communications and Silver Tree Publishing, and her significant work as a speaker, executive coach, and market researcher. Her books -- "Think Like a Marketer: How a Shift in Mindset Can Change Everything for Your Business" and "Commencement: The Beginning of a New Era in Higher Education" -- have sold thousands of copies and have changed companies, universities, careers, and lives for the better. Kate's insights about marketing and higher education have been featured in Forbes, the Chronicle of Higher Education, Harvard Business Review's Ascend magazine, CEO World magazine, and Business Insider, and on NPR, CBS, NBC, Spectrum News, and C-Suite Radio. She is an award-winning writer with expertise in producing medical and scientific publications. Kate was diagnosed with hypermobile Ehlers-Danlos Syndrome at age 45, after a lifetime of mysterious medical struggle. Kate is proud to serve as a healthcare advocate for fellow EDS/HSD/Marfan's patients and to create opportunity and hope for those who are suffering. EDS Guardians is a federally recognized 501(c)(3) nonprofit charity.
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