To Diagnose or Not to Diagnose? hEDS vs HSD

If you are wondering whether it is worth continuing to pursue a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD), you are not alone.

Perhaps you have spent years moving between appointments without receiving clear answers. You may have been told that your symptoms are unrelated, that your pain is simply part of being flexible, or that a diagnosis would not change anything. You may have left consultations feeling dismissed, confused, or unsure whether you can trust your own experience.

After enough uncertainty, it becomes difficult to know what to do next. Should you keep searching for a diagnosis? Should you begin managing your symptoms without one? How can you make safe decisions when nobody has properly explained what is happening?

These are reasonable questions. The system has left many people with hypermobility trying to find their own way through a condition that remains poorly understood and inconsistently managed.

A diagnosis can be valuable, and it is worth pursuing when possible. But while you are searching for answers, you can also begin learning about your body, finding informed support, and exploring safe ways to manage the symptoms you are already experiencing.

Why is diagnosis so difficult?

The diagnostic journey for hEDS and HSD is often measured in decades rather than months. For many people, it takes around 17 years or longer to receive a diagnosis, while more recent studies have reported average delays of approximately 19 to 22 years.

During that time, people may live with joint pain and instability, repeated injuries, fatigue, dizziness, digestive problems and other symptoms without anyone bringing the full picture together.

This delay is not simply an unfortunate accident. It reflects serious gaps in professional education, access to knowledgeable clinicians, joined-up care and recognition of conditions that often affect several body systems at once. When every symptom is assessed separately, the overall pattern can easily be missed.

Many patients are therefore expected to navigate a fragmented system while unwell, exhausted and unsure where to turn. It is understandable that this can leave someone feeling hesitant, overwhelmed or dependent on finally meeting the right professional.

Understanding the difference between hEDS and HSD

There is currently no blood test, scan or genetic test that can confirm hEDS. Unlike the other recognized types of Ehlers-Danlos syndrome, its genetic cause has not yet been identified, so hEDS is diagnosed using clinical criteria.

Genetic assessment can still be important when a person has features that may suggest another inherited connective-tissue condition. EDS currently includes 13 recognized types in total, and genetic testing can confirm the other 12 types when they are suspected.

Ruling out these conditions matters because some carry different risks and may require different monitoring.

Under the current framework, a person may receive an HSD diagnosis when they have symptomatic joint hypermobility but do not meet all the 2017 clinical criteria required for hEDS.

That sounds straightforward on paper. In practice, the reason for separating the two conditions remains confusing and unclear.

There is no biological test that distinguishes hEDS from HSD. Symptom severity does not reliably separate them either. Someone diagnosed with HSD may experience severe pain, instability, fatigue, autonomic symptoms, gastrointestinal problems and major limitations in daily life. HSD should not be understood as a mild or less significant version of hEDS.

Research has found substantial overlap in symptoms and associated conditions between the two groups.

This understandably leaves many patients confused. Two people may have very similar difficulties, yet receive different labels because one meets a few more items on a clinical checklist.

So what is the underlying biological difference between hEDS and HSD?

At present, we do not have a clear answer.

What does recent research tell us?

A recent global survey of nearly 4,000 people with hEDS and HSD highlighted just how uncertain the current boundary may be.

When participants were reassessed against the 2017 hEDS criteria, approximately 50% of those reporting an HSD diagnosis appeared to meet the criteria for hEDS, while around 26% of those reporting an hEDS diagnosis did not meet the full criteria when reassessed.

The study also found extensive overlap in symptoms and associated conditions.

As a survey based partly on self-reported diagnoses and symptoms, the findings have limitations. However, they raise an important question: are hEDS and HSD truly separate conditions, or are we drawing a clinical line through different presentations of the same broader spectrum?

The current labels may help organize care and research, but they do not yet provide a complete explanation of what is happening biologically. Diagnostic criteria are also under active review and new criteria are expected to be published in December 2026, which confirms that the existing framework is not considered the final answer.

Research changes faster than healthcare

Even when new evidence emerges, it does not immediately reach everyday clinical practice. An often-cited estimate suggests that it can take around 17 years for research findings to become routinely used in healthcare, although the exact delay varies considerably. This gap between what is known and what is consistently done is often called the know-do gap.

It means that research may be questioning old assumptions while people are still meeting professionals who have received little training in hypermobility. It means a patient may be told that HSD is insignificant, that hEDS is extremely rare, or that widespread symptoms cannot be connected, even when newer evidence is challenging those ideas.

Medical knowledge may be evolving, but many patients are still being treated according to outdated or incomplete information. They should not have to carry the consequences of that delay alone.

So, is getting a diagnosis still worth it?

Absolutely.

A diagnosis isn't just about having a label. It can have important practical implications throughout your healthcare.

A diagnosis may help:

• validate your experience after years of uncertainty;

• rule out other inherited connective tissue disorders;

• ensure hypermobility is considered before surgery, anaesthesia, rehabilitation, or other medical procedures;

• help healthcare professionals make more informed decisions about your care;

• improve access to referrals, accommodations, or specialist services;

• make it easier to explain your condition to family, employers, educators, and other healthcare providers.

Whenever possible, having hypermobility documented in your medical record is valuable.

But if a formal diagnosis isn't available yet, those considerations don't simply disappear.

The more you understand your own body and medical history, the better equipped you are to communicate important information to the healthcare professionals involved in your care and advocate for what you need.

You can begin learning while you wait

Many people postpone taking action because they do not know what is safe. They may have received conflicting advice, had previous treatments make them worse, or been warned to avoid activity without being offered a realistic alternative.

That uncertainty is understandable. You should not be blamed for feeling cautious when you have not been properly guided.

However, diagnosis and management do not always need to happen one after the other. They can develop alongside each other.

While continuing to seek appropriate medical assessment, you can begin learning how hypermobility may affect your own body. You can observe patterns in your symptoms, understand the difference between helpful effort and overload, explore pacing, and gradually build confidence with movement that is adapted to your needs.

Safe management is not about following generic exercise advice or pushing through pain. It begins with understanding your individual presentation and making gradual, informed decisions.

Community knowledge matters

When formal healthcare does not provide enough information, people naturally look elsewhere.

The hypermobility community has built a considerable body of knowledge through lived experience. Patients have often identified patterns, compared symptoms and shared practical strategies long before those conversations became common in clinics or research.

Many people become highly knowledgeable about their own condition because they have had no other choice. This patient expertise deserves respect.

An online community, support group or knowledgeable practitioner can help you find language for what you are experiencing, discover questions to take to appointments and feel less isolated. Community advice will not always apply equally to everyone, so it is still important to consider your own history and risks. But finding people who genuinely understand can be an essential source of validation and direction when the healthcare system has left you without either.

You do not need to navigate the waiting period completely alone.

Understanding your body is a place to begin

At ParaMotion, we believe that understanding your own body is the first step toward feeling better.

A diagnosis can be an important part of that understanding, and we encourage you to keep pursuing appropriate answers. At the same time, you can begin educating yourself, validating what you are experiencing and learning management strategies that are adapted to your symptoms and circumstances.

You do not need to have every answer before taking a safe first step.

At ParaMotion, we help people with hypermobility understand their symptoms, their movement and the factors that may be affecting their everyday well-being. We meet you wherever you are in the diagnostic journey and help you identify practical next steps without dismissing the complexity of what you are experiencing.

Book a free 15-minute introductory call, and we can begin by discussing where you are, what you need and how ParaMotion may be able to support you.

Let us understand your body together, and work toward helping you feel safer, stronger and more confident within it.

Sources:

• Defining the Clinical Complexity of hEDS and HSD: A Global Survey of Diagnostic Challenge, Comorbidities, and Unmet Needs. Authors: Daylor, V., Norris, R. A., Gensemer, C., et al. (Medical University of South Carolina, 2025)

• The 2017 international classification of the Ehlers–Danlos syndromes