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HSD vs. hEDS: What is the Difference Between Them?

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Hypermobility Spectrum Disorder (HSD) and Hypermobile EDS (hEDS) share the exact same symptom severity, pain levels, and treatment plans. The only difference is that hEDS requires meeting a strict 2017 diagnostic checklist originally designed to help researchers isolate genetic mutations.

Key Takeaways

  • HSD is not a milder condition than hEDS; both cause identical levels of pain, joint instability, and fatigue.
  • The distinction between HSD and hEDS relies entirely on a strict 2017 diagnostic checklist designed for genetic research.
  • Laboratory studies suggest HSD and hEDS may actually exist on a continuous spectrum of the same underlying connective tissue disorder.
  • The medical standard of care, specialized physical therapy, and symptom management are exactly the same for both conditions.

If you have been diagnosed with Hypermobility Spectrum Disorder (HSD) instead of Hypermobile Ehlers-Danlos Syndrome (hEDS), you may be wondering if your condition is milder or somehow “less real.” The short answer is no: HSD is not a milder condition than hEDS [1][2]. In fact, people with HSD experience the exact same levels of chronic pain, joint instability, fatigue, and daily disruption as those with hEDS [3][4].

The distinction between the two labels comes down to a strict checklist created in 2017, not the severity of your symptoms [5].

The 2017 Diagnostic Criteria

In 2017, the international medical community updated the diagnostic criteria for hEDS [6]. At the time, researchers were (and still are) trying to discover the specific genetic mutations that cause hEDS [7]. To do this effectively, they needed a very strict, narrow, and uniform definition of the condition so they could study a genetically similar group of people [8][9].

To be diagnosed with hEDS under these rules, you must meet three strict criteria:

  • Criterion 1: Generalized joint hypermobility, usually measured by the Beighton score (a standard physical test of joint flexibility) [10][11]. Note that joint flexibility can naturally decrease as you get older or after sustaining joint injuries, which is one reason adults may not meet the hEDS criteria [12].
  • Criterion 2: A specific combination of systemic features (like stretchy skin, particular types of scarring, or dental crowding) and/or a first-degree relative who also meets the strict hEDS criteria [9][13].
  • Criterion 3: The exclusion of other connective tissue disorders, such as other types of EDS (like Classical or Vascular EDS) or conditions like Marfan syndrome [14][13].

If you have symptomatic joint hypermobility—meaning your joints are excessively flexible and cause you pain or instability—but you fall even slightly short of the strict Criterion 2 checklist, you are diagnosed with HSD [15][8]. For example, you might have severe joint dislocations and debilitating chronic pain, but because you do not have enough specific skin features or a formally diagnosed parent, you receive an HSD diagnosis instead of hEDS [13].

Clinical Equivalence

Many medical experts now believe that HSD and hEDS are not actually different conditions, but rather exist on a continuous spectrum of the same underlying disorder [16][17]. Recent laboratory studies have even shown that dermal fibroblasts (skin cells) from patients with both HSD and hEDS share the exact same microscopic and molecular abnormalities [11][16].

When comparing patients with HSD and hEDS, studies show there is no significant difference in:

  • Physical functioning: Muscle strength and the ability to perform daily tasks are indistinguishable [1][2].
  • Pain levels: Both groups report similarly severe levels of chronic musculoskeletal pain and fatigue [18][19].
  • Quality of life: Both conditions cause significant decreases in overall health-related quality of life [20][21].

Treatment and Standard of Care

Because the symptoms and complications are virtually identical, the treatment and standard of care for HSD and hEDS are exactly the same [13][22]. The medical management of your condition should focus on your specific symptoms, regardless of whether your chart says HSD or hEDS [23][24].

Your care plan should include the same multidisciplinary approach used for hEDS, which may involve:

  • Physical and Occupational Therapy: Specialized physical therapy protocols to strengthen the muscles around unstable joints [23][25], alongside occupational therapy for joint protection, bracing, and ergonomic adaptations to daily life.
  • Pain management: Strategies to address chronic pain and central sensitization (a condition where the nervous system becomes highly reactive and amplifies pain signals) [3][22].
  • Comorbidity screening: Monitoring for conditions that commonly appear alongside both HSD and hEDS, such as autonomic dysfunction (like Postural Orthostatic Tachycardia Syndrome, or POTS) and gastrointestinal issues [2][4].

An HSD diagnosis is just as valid as an hEDS diagnosis. It requires the exact same level of medical care, validation, and symptom management [26].

Patient Advocacy Tip

If you encounter a healthcare provider who dismisses your HSD diagnosis as “just being double-jointed” or assumes it is a milder condition than hEDS, you can advocate for yourself by saying: “My specialist explained that HSD and hEDS share the exact same clinical symptom severity, and the distinction was primarily created for genetic research purposes. Can we focus on treating my specific symptoms based on the latest standard of care for symptomatic hypermobility disorders?”

Frequently Asked Questions

Is HSD a milder condition than hEDS?
No, HSD is not a milder form of hEDS. People with HSD experience the exact same levels of chronic pain, joint instability, fatigue, and daily disruption as those diagnosed with hEDS.
Why did I get diagnosed with HSD instead of hEDS?
You may receive an HSD diagnosis if you have symptomatic joint hypermobility but do not perfectly meet the strict 2017 diagnostic checklist for hEDS. This checklist was created primarily for genetic research purposes, not to measure the severity of your symptoms.
Is the treatment for HSD different from hEDS?
No, the treatment and standard of care for both conditions are exactly the same. Your medical care will focus on managing your specific symptoms, such as through specialized physical therapy, joint stabilization, and pain management.
What comorbidities should I look out for with HSD?
Both HSD and hEDS are associated with similar non-joint issues. You and your doctor should proactively monitor for autonomic dysfunction, such as Postural Orthostatic Tachycardia Syndrome (POTS), as well as gastrointestinal problems.

Questions for Your Doctor

  • Given my HSD diagnosis, which multisystemic comorbidities—such as POTS or gastrointestinal issues—should we be proactively screening for?
  • Can you refer me to a physical therapist or occupational therapist who has specific experience treating hypermobility spectrum disorders?
  • Since HSD and hEDS require the same standard of care, how will we approach long-term pain management and joint stabilization in my treatment plan?
  • If my symptoms worsen or change over time, how often should we review my care plan?

Questions for You

  • What are the specific symptoms (like joint subluxations, chronic pain, or fatigue) that are most disruptive to my daily life right now?
  • Have I noticed any non-joint-related symptoms, like dizziness upon standing or sudden digestive issues, that I should bring up with my doctor?
  • Are there any physical activities or daily tasks that I have started avoiding due to fear of joint injury or pain?

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References

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    Journal of musculoskeletal & neuronal interactions 2022; (22(1)):5-14.

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    Subtle differences in autonomic symptoms in people diagnosed with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders.

    Martinez KL, Mauss C, Andrews J, et al.

    American journal of medical genetics. Part A 2021; (185(7)):2012-2025 doi:10.1002/ajmg.a.62197.

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This page explains the differences between HSD and hEDS for educational purposes only. Always consult your healthcare provider or specialist for an official diagnosis and personalized treatment plan.

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