While many clinicians are familiar with the musculoskeletal, gastrointestinal, and cardiovascular manifestations of Ehlers-Danlos syndrome (EDS), the impact of connective tissue differences on the orofacial system is far less recognised. For many individuals with EDS, subtle but persistent impairments in oral posture, breathing, chewing, swallowing, and speech can significantly affect daily function, nutrition, communication, and quality of life.
Orofacial myofunctional disorders (OMDs) are increasingly recognised across a range of clinical populations, yet they remain under-identified in people with EDS—despite clear biomechanical and neuromuscular reasons for increased vulnerability.
Understanding orofacial myofunctional disorders
Orofacial myofunctional disorders (OMDs) describe atypical patterns of movement, posture, and coordination of the muscles of the lips, tongue, jaw, cheeks, and face. These patterns can disrupt essential functions including:
- Lip closure and resting posture
- Tongue resting posture, strength, and mobility
- Nasal versus oral breathing
- Swallowing efficiency and safety
- Speech clarity, resonance, and articulation
OMDs are not isolated habits; they reflect system-level interactions between structure, tone, coordination, sensory feedback, and learned motor patterns. In connective tissue disorders such as EDS, these systems are often compromised simultaneously.
Why people with EDS are at greater risk
Ehlers-Danlos syndrome encompasses a group of heritable connective tissue disorders characterised by joint hypermobility, tissue fragility, and altered proprioception. These features have direct and compounding effects on the orofacial complex.
Joint hypermobility of the TMJ and cervical spine
Hypermobility of the temporomandibular joint (TMJ) and upper cervical spine can lead to instability, pain, altered mandibular control, and reduced endurance during speech and mastication. TMJ dysfunction is highly prevalent in hypermobile and classical EDS subtypes and is frequently associated with clicking, locking, dislocation, and pain-related movement avoidance.
Altered cervical stability further influences jaw mechanics, airway positioning, and swallowing coordination.
Hypotonia and poor load tolerance of orofacial muscles
Reduced muscle tone and impaired connective tissue support can compromise the efficiency of:
- Lip seal
- Tongue elevation and lateralisation
- Buccal tension
These impairments directly affect bolus control, airway protection, and speech precision. Importantly, reduced tone is often accompanied by early fatigue, meaning function may deteriorate over the course of a meal or conversation.
Craniofacial morphology and airway considerations
High, narrow palates, dental crowding, and altered maxillofacial growth patterns are commonly reported in EDS and related hypermobility conditions. These features can interfere with nasal breathing, promote habitual mouth breathing, and disrupt optimal tongue rest posture—key foundations of healthy orofacial function.
Bruxism, dislocations, and maladaptive compensations
Joint instability and pain frequently lead to compensatory behaviours such as clenching, grinding, or rigid jaw postures. While these strategies may temporarily enhance stability, they often exacerbate pain, fatigue, and dysfunction over time.
Systemic comorbidities
Comorbid conditions such as mast cell activation syndrome (MCAS), dysautonomia, and chronic pain syndromes may further impair respiratory regulation, sensory processing, and motor control. These factors often interact with orofacial function, particularly in relation to breathing–swallowing coordination and voice use.
What the research tells us
High-quality prevalence studies specifically examining orofacial myofunctional disorders in EDS remain limited. However, converging evidence from multiple domains highlights a significant overlap:
- De Coster et al. (2005) report that up to 50% of individuals with EDS experience TMJ dysfunction, with implications for mastication, speech, and oral health.
- A global patient survey conducted by the Ehlers-Danlos Society (2021) found that over 80% of respondents reported chronic jaw pain or dysfunction, and more than 50% reported difficulties with chewing or swallowing.
- Case reports and interdisciplinary reviews describe high rates of mouth breathing, atypical swallow patterns, tongue mobility restrictions, and oral fatigue in hypermobile populations.
- Research into OMDs more broadly demonstrates associations between altered oral posture and impairments in breathing, swallowing efficiency, and speech outcomes (Messner & Lalakea, 2000; Guilleminault et al., 2016; Ferreira et al., 2018).
While direct causative pathways continue to be explored, the biological plausibility of orofacial myofunctional involvement in EDS is strong.
The role of orofacial myology in EDS
Orofacial myology focuses on restoring functional patterns of posture, movement, and coordination within the orofacial system. In the context of EDS, this work must be approached with particular care and clinical nuance.
Key principles include:
- Optimising oral rest posture (tongue, lips, jaw) to support airway patency and reduce unnecessary muscular effort
- Improving coordination rather than maximal strength, recognising connective tissue fragility
- Supporting nasal breathing where appropriate, in collaboration with ENT and respiratory professionals
- Addressing swallowing patterns to reduce compensatory tongue thrust, oral residue, and fatigue
- Integrating sensory awareness and proprioceptive retraining, which may be altered in EDS
Importantly, therapy often requires modification:
- Lower intensity, higher frequency practice
- Close monitoring of pain and fatigue
- Avoidance of aggressive strengthening or stretching
- Strong interdisciplinary communication
When embedded within a speech pathology framework, orofacial myology can play a valuable role in supporting swallowing safety, speech clarity, voice efficiency, and overall functional endurance.
Clinical implications for Speech Pathologists and Allied Health professionals
For clinicians working with individuals with EDS, orofacial function should be considered even when it is not the presenting complaint. Key clinical considerations include:
- Screening for habitual mouth breathing, open-mouth posture, and tongue thrust
- Assessing jaw stability, endurance, and coordination during functional tasks
- Evaluating fatigue-related changes across meals or sessions
- Collaborating with orthodontists, ENTs, dentists, physiotherapists, and myofunctional therapists
- Adapting intervention plans to account for tissue fragility, pain sensitivity, and autonomic symptoms
Early identification and appropriately tailored intervention may help reduce secondary complications and improve functional participation.
Final thoughts
Orofacial myofunctional concerns in the EDS population are common, under-recognised, and often misunderstood. Given the central role of the orofacial system in breathing, nutrition, communication, and social participation, greater clinical awareness is essential.
Speech pathologists are uniquely positioned to identify these patterns, integrate orofacial myology principles thoughtfully, and collaborate across disciplines to support individuals with EDS using evidence-informed, person-centred care.
References
- Castori, M., et al. (2017). Management of pain and fatigue in Ehlers–Danlos syndrome. American Journal of Medical Genetics Part C, 175(1), 212–219.
- De Coster, P. J., et al. (2005). Temporomandibular joint dysfunction in Ehlers-Danlos syndrome: A review of the literature. Journal of Oral Rehabilitation, 32(9), 733–740.
- Ehlers-Danlos Society. (2021). Global patient survey – dental and orofacial findings.
- Ferreira, C. L. P., et al. (2018). Orofacial myofunctional disorders: Clinical characteristics and therapeutic approaches. CoDAS, 30(6).
- Guilleminault, C., et al. (2016). Myofunctional therapy and sleep-disordered breathing. Sleep Medicine Reviews, 25, 84–94.
- Messner, A. H., & Lalakea, M. L. (2000). The effect of ankyloglossia on speech in children. Otolaryngology–Head and Neck Surgery, 122(4), 495–500.
