Understanding Hypermobility: What Clinicians and Patients Need to Know
Welcome to this week’s Bendy Bulletin! This week, we’re focusing on an important update in hypermobility care: the latest insights into common concerns, updated terminology, and diagnostic tools for hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS). Despite how many people are impacted by these conditions, they’re often overlooked, leading to delayed diagnoses and ineffective treatments.
I’ll explore how joint hypermobility can impact multiple systems in the body, why early identification is key, and practical steps for improving outcomes. Whether you’re a healthcare professional looking to deepen your understanding or someone with hypermobility wanting to share this with your care team, this information is essential. Let’s spread awareness and work toward better care for the hypermobile community!
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Understanding Hypermobility: What Clinicians and Patients Need to Know
Let’s dive into a topic that’s often misunderstood but incredibly important: recognizing and managing hypermobility-related disorders. While many healthcare professionals assume these conditions are rare, the truth is they’re far more common than most realize - and chances are, you’ve already seen patients with hypermobility, even if it wasn’t diagnosed.
So why should we care? For starters, hypermobility isn’t just about “being flexible.” It can impact nearly every system in the body, from causing chronic joint pain and fatigue to affecting heart rate, digestion, and even mental health. Yet, because it often flies under the radar, patients frequently endure years of frustration and misdiagnoses.
One of the most significant challenges is how these disorders present. A patient might show up with persistent ankle sprains or shoulder instability, but they’re also struggling with dizziness, GI issues, or overwhelming fatigue. It’s easy to miss the bigger picture - hypermobile joints can be the tip of the iceberg, hinting at broader connective tissue challenges.
Many patients stop reporting their symptoms due to lack of validation and disbelief. Asking the right questions will facilitate a more accurate diagnosis and comprehensive treatment plan.
Why Early Recognition Matters
Delayed recognition can lead to poor outcomes. Traditional treatments often don’t work for these patients - or worse, make their symptoms more severe. For example, a patient with fragile connective tissue might leave physical therapy in more pain because their care plan wasn’t adapted to their needs. Recognizing hypermobility early allows clinicians to tailor treatments, reduce injury risk, and improve quality of life.
How to Spot Hypermobility
Diagnosing hypermobility can feel tricky, but it doesn’t have to be overwhelming. Tools like the Beighton Score and the 5-point Questionnaire can help identify key signs. But even without fancy scoring systems, just asking the right questions can reveal a lot. For instance:
Does the patient experience joint instability or frequent injuries?
Are there issues like fatigue, unexplained dizziness, or digestive problems?
Do they bruise easily or notice stretchy skin or abnormal scarring?
And don’t forget to ask about family history - joint hypermobility often runs in families and may include a mix of connective tissue and other systemic concerns.
What Clinicians Can Do
Once you’ve identified hypermobility, the key is adapting your approach. Patients with hypermobility-related disorders need personalized care plans that respect their unique challenges. Gentle, progressive physical therapy can help stabilize joints, while addressing systemic issues like fatigue or dysautonomia ensures a more holistic treatment.
And here’s a critical takeaway: hypermobility isn’t just about joints. It’s about the whole person. Listening to what’s really going on - beyond the obvious symptoms - can transform your care approach and make all the difference for these patients.
Let’s Work Together
An unfortunately misconception is that symptomatic joint hypermobility always gets worse and no treatments exist. This could not be further from the truth and is the inspiration behind my podcast, Bendy Bodies!
I founded the Bendy Bodies podcast to make information about symptomatic joint hypermobility as accessible as possible. On the podcast, I bring the world’s leading experts on EDS and HSD to the microphone - bringing patients and clinicians the information they need to mitigate symptoms and improve quality of life.
If you’re a healthcare professional, I encourage you to keep joint hypermobility on your radar. And if you’re a patient, don’t hesitate to share this information with your care team - it could be the missing puzzle piece that helps you finally get the answers you need.
For more details, check out the Bendy Bodies podcast. Together, we can ensure hypermobility-related disorders are recognized and treated with the care they deserve.
P.S. Let’s keep the conversation going! Share this newsletter with your healthcare team or anyone who might benefit from learning more about hypermobility.
The Symptomatic Joint Hypermobility Guide
You can download the Symptomatic Joint Hypermobility Guide here.
Living with Hypermobility
Find a list of symptoms, tests, and treatments here.
LAST THURSDAY: Jeevan Mann and Delaney Kenney
We were thrilled to welcome Jeevan Mann and Delaney Kenney to the podcast, where they shared an exciting behind-the-scenes look at groundbreaking research on hypermobile Ehlers-Danlos Syndrome (hEDS) from the Gates Institute at UCHealth in Aurora, Colorado. Their insights into the latest advancements in hEDS research offered valuable knowledge and hope for listeners eager to understand the future of care for hypermobility and connective tissue disorders. Don’t miss this fascinating episode packed with science and innovation!
THIS THURSDAY: Subinoy Das, MD
This week, we’re honored to have Subinoy Das, MD join the podcast. Problems in the ear, nose and throat are so common in people with EDS, and Dr. Das is recognized as one of the nation's best sinus surgeons. I was so excited to chat with Dr. Das about ear, nose, and throat problems in people with EDS. HSD, MCAS, and POTS.
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
I am going to print this page and add it to my medical records as an awareness piece for my medical team. Thanks, Dr. B!