Bendy Beginnings: Your Crash Course on hEDS and HSD

Happy New Year, Bendy Buddies!

As we step into 2025, let’s start with the basics - a crash course on hypermobile Ehlers-Danlos Syndromes (hEDS) and Hypermobility Spectrum Disorders (HSD). To make this as helpful as possible, we’re including our Symptomatic Joint Hypermobility Guide as a free download!

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• This Hybrid Global Learning Conference (February 7-9, 2025) is a great opportunity to collaborate, learn, and network.  There are in-person interactive workshops that cover navigating healthcare systems, including funding access (NDIS), and managing cervical spine conditions. 

  • This should not be viewed as an either-or.  To be up to speed on all things EDS and HSD, you should attend this Ehlers-Danlos Society conference AND listen to all episodes of the Bendy Bodies podcast.

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What’s the Difference Between hEDS and HSD?

• hEDS (Hypermobile Ehlers-Danlos Syndrome): A genetic connective tissue disorder belonging to the EDS family characterized by joint hypermobility, stretchy skin, and weak tissues.  Chronic pain, unstable joints, and systemic symptoms are common. The hEDS diagnosis is made clinically, as there are no confirmatory tests for this subtype of EDS (yet).

• HSD (Hypermobility Spectrum Disorders): Encompasses a range of hypermobility-related conditions for those that don’t meet the strict diagnostic criteria for hEDS or have another condition to explain their symptoms. HSD can still cause multisystemic symptoms and greatly impact quality of life.

Key Facts About hEDS and HSD:

• It’s More Than “Being Flexible”: While joint hypermobility is a hallmark feature, these conditions can also involve diffuse and persistent pain, fatigue, gastrointestinal issues, cardiovascular symptoms (like the elevated heart rate seen in POTS), and more.

• Systemic Impact: hEDS and HSD aren’t just about the joints - they can affect nearly every system in the body, from digestion to autonomic nervous system regulation.

• It’s Often Misunderstood: Most patients face delays in diagnosis, sometimes being dismissed as “too flexible” or “just anxious.” Overlapping symptoms with other conditions contributes to the problem with some people waiting decades for a proper evaluation and diagnosis. Advocacy and education are key to changing this narrative.

• Misdiagnosis:  Many patients experience misdiagnosis or prolonged delays because the hypermobility and associated symptoms, such as joint pain, fatigue, and skin hyperelasticity, are often mistaken for more common musculoskeletal or autoimmune disorders. The variability in symptom presentation contributes to this diagnostic challenge.

• Traumatic Encounters:  Misdiagnosis and delayed diagnosis of hEDS and HSD can cause significant trauma for patients. The prolonged uncertainty and confusion can lead to feelings of frustration, isolation, and invalidation, as many individuals are told their symptoms are "all in their head" or are misattributed to unrelated conditions. This lack of proper recognition often results in unnecessary treatments, worsening of symptoms, and missed opportunities for early interventions, further contributing to physical and emotional distress. Over time, this can erode trust in healthcare systems and exacerbate feelings of being misunderstood or ignored. Dr. Colin Halverson discussed this with me on this Bendy Bodies podcast episode.  

• Not One-Size-Fits-All: Every person’s experience is different, and symptoms can range from mild to debilitating. Individualized care and self-management strategies are essential.

Did You Know?

• Joint Instability in hEDS/HSD can lead to frequent dislocations or subluxations, making everyday activities challenging.

• Chronic Pain is one of the most common symptoms, often requiring a multidisciplinary approach for management.

• There are specific signs that suggest a genetically defined type of EDS or other hereditary disorder of connective tissue (HDCT). Check out our free Symptomatic Joint Hypermobility Guide for more details. 

  

• Comorbid Conditions like POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), and GI dysmotility are common and may complicate care.

• Treatments DO exist and can often improve symptoms and quality of life. Subscribe so you won’t miss our upcoming newsletter on hEDS and HSD treatments:

Steps to Take in 2025:

1. Build Your Care Team: Work with compassionate healthcare providers who understand the complexities of hEDS and HSD (or at least are willing to learn).  Your primary care provider, physical therapist, occupational therapist, pain management expert, and neurologist can all play key roles.

2. Focus on Strength and Stability: Low-impact, tailored exercises can help stabilize hypermobile joints and prevent injury.

3. Find Your Community: Connecting with others who share similar experiences can provide support, resources, and a sense of belonging.

Understanding hEDS and HSD is the first step toward managing these conditions and living a fuller, healthier life. To help you on your journey, don’t forget to download our Symptomatic Joint Hypermobility Guide included in this newsletter. Whether you’re a patient, caregiver, or healthcare professional, knowledge is power—and we’re here to support you every step of the way.

Here’s to a year of growth, strength, and resilience.

P.S. Want us to dive deeper into a specific topic this year? Let us know - we’d love to hear from you!

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Here’s our Symptomatic Joint Hypermobility Guide as a free download! Whether you’ve been navigating these conditions for years or are just beginning to connect the dots, understanding the essentials can be a game-changer for your health and well-being.

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LAST THURSDAY, JANUARY 9TH:  Emily Bohan, DPT

We were so fortunate to have Dr. Emily Bohan, DPT, join the podcast to share her expertise in pelvic physical therapy for individuals with hypermobility. Dr. Bohan's deep understanding of the connection between pelvic health, pain management, and joint stability provided invaluable insights. Her practical strategies for improving function and overall well-being through targeted pelvic therapy approaches are a must-hear for anyone navigating hypermobility challenges.

THIS THURSDAY, JANUARY 16TH: Solo Episode

This week, it’s just me, Dr. Linda Bluestein, and I’m here to answer your burning questions about hypermobility, Ehlers-Danlos Syndromes (EDS), and everything in between! Questions from this episode include: should my “bendy” daughter quit dancing, how does the IV fluid shortage affect those with hEDS and POTS, if you should stop taking supplements before a surgery, and how to prepare for surgery.

Well that’s all for this week; thank you so much for reading and supporting this newsletter. Talk to you soon, Bendy Buddies!

Yours in Health,

Dr. Bluestein