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EDS & Hypermobility

The GoodHope GEAR Program for EDS and Hypermobility Spectrum Disorders

Most EDS patients who seek physical rehabilitation encounter one of two problems: a clinician who recommends avoiding anything that could injure already-lax joints, or a clinician who applies a generic musculoskeletal rehabilitation protocol that does not account for connective tissue compromise and produces suboptimal results. What exists in between — a structured, evidence-informed framework specifically designed for EDS that tells clinicians what to do and why — has been rare. The 2021 paper by Mittal and colleagues describing the GoodHope EDS and Rare Disease Program's GEAR protocol (Graded Exercise and Activity Rehabilitation) from University Health Network in Toronto is a step toward closing that gap. It provides a systematized, multidisciplinary rehabilitation framework grounded in the physiology of hypermobile connective tissue and designed to be applied across EDS subtypes.

What the GEAR Program Is and Who It Was Developed For

The GoodHope EDS program is one of the few clinical programs in North America specifically structured for the systematic care of EDS across its subtypes. The GEAR rehabilitation framework was developed iteratively within that program, drawing on the experience of multidisciplinary clinicians — physiotherapists, kinesiologists, physicians, and pain specialists — who collectively managed hundreds of EDS patients over years. The Mittal 2021 paper formalizes that clinical experience into a published framework, making the program's structure, rationale, and components accessible to clinicians outside the GoodHope center.

The program is designed for patients across EDS subtypes, with specific modifications for hEDS versus the rarer genetic subtypes (classical, kyphoscoliotic, and others). The core framework applies to all subtypes, but precautions and specific exercise selections differ based on subtype-specific tissue vulnerabilities. For hEDS — the most common subtype and the one most frequently encountered in rehabilitation settings — the framework addresses the primary functional deficits established by the Rombaut and Scheper research: reduced muscle strength, impaired neuromuscular control, and degraded proprioceptive feedback.

The Core Rehabilitation Targets: Why These and Not Others

The mechanistic framing of GEAR aligns directly with what the research literature establishes about the nature of functional impairment in EDS. Rombaut and colleagues established that the primary deficit in EDS-HT is neuromuscular control, not muscle mass — the patients have adequate muscle tissue but cannot produce and sustain the force output that tissue should be capable of. Scheper and colleagues established that proprioceptive accuracy is measurably impaired in hEDS — joint position sense is degraded in ways that compromise motor control and postural stability.

Both findings point toward the same rehabilitation priorities: improving the neuromuscular control system's ability to coordinate force production, improving the quality of proprioceptive feedback through training that challenges joint position sensing, improving postural stability as the integrative product of these systems, and gradually building mechanical load tolerance in connective tissue that — like all connective tissue — remodels in response to appropriate mechanical stimulus. The GEAR program is structured around these priorities, not around the intuitive but misguided goal of simply building more muscle mass.

Pain management and patient education are also core program components. Pain in EDS is multifactorial — it involves joint instability, impaired movement patterns from protective muscle guarding, central sensitization from chronic pain signaling, and in many patients the additional burden of inadequate diagnosis and dismissive clinical encounters. The GEAR program integrates pain education that frames pain as a signal to be understood rather than simply avoided or suppressed, and actively addresses the fear-avoidance patterns that develop when patients have learned that movement can hurt.

The Graded Exercise Principle: How Much Is Enough, How Much Is Too Much

The "graded" in GEAR refers to the progressive loading principle that is essential for EDS rehabilitation. EDS connective tissue responds to mechanical loading in the expected direction — it remodels toward greater stiffness and load tolerance with appropriate stimulus, as Møller and colleagues demonstrated in genetically confirmed classic EDS. But the window between adequate loading stimulus and excessive loading that produces tissue injury is narrower in EDS than in healthy connective tissue. The starting load must be low, the progression must be slow, and the monitoring for adverse responses must be more careful.

The GEAR protocol operationalizes this principle through supervised progressive loading that starts below the patient's current tolerance threshold and increases systematically over weeks and months. The goal is not to reach a specific weight or resistance level. The goal is to consistently apply a loading stimulus sufficient to drive connective tissue and neuromuscular adaptation without exceeding tissue tolerance. This requires ongoing assessment and protocol adjustment rather than a fixed exercise prescription — a characteristic of specialized EDS rehabilitation that generic clinical protocols typically cannot provide.

The Proprioceptive Training Component

Proprioceptive training is a distinct and important component of the GEAR framework, addressing the degraded joint position sense that Scheper documented in hEDS patients. Standard physiotherapy proprioceptive exercises — balance board training, single-leg stance exercises, joint position replication tasks — are adapted for the EDS context by managing joint load and protecting against unstable positions that could produce subluxation.

The training goal is to improve the accuracy and reliability of joint position sense by repeatedly challenging the patient to reproduce joint positions without visual feedback, to detect small joint movements, and to maintain postural stability under conditions of reduced sensory input. When practiced consistently, proprioceptive training drives neuroplastic changes in the sensory processing pathways that convey joint position information — the circuits become more precise at interpreting and relaying the mechanoreceptor signals that lax connective tissue produces. The connective tissue is not changed. The brain's ability to use the signals it receives from that tissue is improved.

Why a Structured Framework Matters for EDS Patients Outside Specialized Centers

The clinical gap the GEAR paper addresses is a geographic and structural one. EDS-specialized rehabilitation programs exist in a small number of centers. Most EDS patients — particularly hEDS patients, who have no definitive genetic test and are frequently diagnosed late, by generalists unfamiliar with the condition — receive rehabilitation from clinicians who have never encountered EDS before or who encounter it rarely. Those clinicians default to standard musculoskeletal protocols that were not designed for connective tissue compromise, or to excessive caution that leaves the patient undertreated.

The value of the Mittal paper is not that it describes a new intervention. The individual components of GEAR — graded exercise, proprioceptive training, pain education, multidisciplinary coordination — are established approaches with supporting evidence in the broader rehabilitation literature. The value is in systematizing those components into a coherent framework designed specifically for EDS, and making that framework available in the published literature where any clinician can access it.

For patients who do not have access to an EDS-specialized program, this paper provides a reference for what a well-designed rehabilitation approach looks like. It can be shared with a physiotherapist who is willing to learn the EDS-specific context. It provides the rationale for why specific components are included and why standard musculoskeletal protocols are insufficient. It gives the clinician-patient team a framework to work from rather than starting from first principles with each session.

Source
Frontiers in Rehabilitation Sciences (2021)

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