Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome, swallowing, and communication
Medical Speech Pathology understands the complex and often under-recognised swallowing, voice, breathing, and cognitive-communication challenges experienced by individuals with Ehlers-Danlos Syndrome (EDS).
The Ehlers-Danlos syndromes are a group of 13 heritable connective tissue disorders, each with distinct diagnostic criteria and clinical features. While EDS is commonly associated with joint hypermobility, pain, and fatigue, its impact on the orofacial system, swallowing, respiration, and voice is frequently overlooked.
For many individuals with EDS, subtle but persistent impairments in oral posture, muscle coordination, breathing patterns, swallowing efficiency, and voice use can significantly affect nutrition, communication, social participation, and quality of life.
Why EDS affects swallowing, voice, and orofacial function
Connective tissue plays a critical role in structural stability, force transmission, proprioception, and endurance. In EDS, connective tissue differences can disrupt multiple systems simultaneously, including the orofacial muscles and joints, the larynx and vocal folds, respiratory support for speech and swallowing, and the sensory feedback required for coordinated motor control. As a result, individuals with EDS often experience multifactorial swallowing and voice difficulties rather than a single isolated impairment.
Swallowing in EDS
Dysphagia (difficulty swallowing) is commonly reported in people with EDS and may arise from several interacting factors.
- Connective tissue laxity and weakness can impair the generation and transmission of pressure required for effective chewing and bolus propulsion. Hypermobility and instability of the temporomandibular joint (TMJ), cervical spine, and hyolaryngeal complex may compromise bolus control, swallow initiation, and airway protection.
- Oropharyngeal dysphagia may occur due to impaired tongue control, reduced pharyngeal strength, altered laryngeal elevation, or discoordinated swallow timing. Individuals may experience choking, coughing, food residue, globus sensation, or aspiration.
- Oesophageal dysphagia is also highly reported in EDS. Connective tissue differences may influence oesophageal motility and coordination, sometimes leading to delayed bolus transit, chest or throat discomfort during swallowing, or the sensation of food sticking in the chest. Reflux-related inflammation may further disrupt oesophageal sensation and swallowing comfort.
- Gastroesophageal reflux disease (GORD), which is more prevalent in EDS, can contribute to oesophageal irritation, altered sensation, pain during swallowing, and secondary laryngeal symptoms.
- Generalised fatigue, jaw pain, cervical discomfort, and postural instability may further reduce swallowing endurance and consistency across meals.
- Autonomic dysfunction (including POTS and other forms of dysautonomia), which is highly prevalent in EDS, may further disrupt swallowing through impaired regulation of salivation, oesophageal motility, reflux control, and respiratory–swallow coordination. Fluctuating autonomic symptoms such as tachycardia, dizziness, fatigue, and presyncope can reduce swallowing endurance and consistency, contributing to variable swallow safety across meals.
- Mast cell activation syndrome (MCAS), which commonly co-occurs with EDS, may also contribute to throat discomfort, burning sensations, mucosal swelling, or pain with swallowing during inflammatory reactions.
Medical Speech Pathology advocates for instrumental swallowing assessment (videofluoroscopy or endoscopic evaluation) where clinically indicated, to accurately identify the physiological drivers of dysphagia and guide safe, individualised management.Â
However, instrumental studies do not always capture the full picture. Many swallowing symptoms in EDS are influenced by factors such as fatigue, autonomic fluctuations, pain, reflux, and postural changes, which may vary across the day or from one meal to another. As a result, symptoms experienced in everyday eating situations may not always be fully reproduced during a single assessment.
For this reason, assessment and management of dysphagia in EDS often requires a comprehensive and integrative approach, combining instrumental findings with detailed clinical assessment, symptom patterns, and the individual’s lived experience of swallowing.
Voice, breathing, and laryngeal function in EDS
Voice and upper airway symptoms are increasingly recognised in people with EDS. Emerging research describes a range of laryngeal findings, including vocal hyperfunction, cricoarytenoid joint abnormalities, arytenoid prolapse, and tissue fragility. However presentations vary considerably between individuals.
Voice difficulties may reflect an interaction between connective tissue characteristics, laryngeal muscle function, compensatory tension patterns, and respiratory-phonatory coordination. Associated conditions, including autonomic dysfunction, breathing pattern disorders, fatigue, and reflux, may further influence vocal comfort, efficiency, and endurance.
Individuals may experience hoarseness, vocal fatigue, breathiness, reduced projection, pitch instability, throat discomfort, or increased effort during speaking. Symptoms may fluctuate with vocal demand, fatigue, and overall physical wellbeing.
Assessment should combine perceptual and functional voice evaluation with laryngeal visualisation, ideally including videostroboscopy where indicated. Consideration of breathing patterns, cervical and extralaryngeal muscle tension, vocal demands, and relevant multisystem comorbidities helps guide individualised management. Treatment should be informed by identified impairments rather than assumptions about connective tissue laxity or instability.
Orofacial myofunctional considerations in EDS
Orofacial dysfunction in people with EDS can involve interactions between joint hypermobility, altered proprioception, pain, muscle function, and compensatory movement patterns. Temporomandibular disorders are particularly relevant, with joint pain, clicking, subluxation, and difficulties with sustained or repetitive jaw movements.
Orofacial presentations may include altered jaw and tongue coordination, increased muscle tension, reduced movement endurance, and difficulties maintaining comfortable, efficient oral postures during speaking, chewing, and swallowing. The contribution of associated factors, including nasal airway obstruction, sleep-disordered breathing, and sensory-motor differences, should also be considered.
Intervention should prioritise comfortable, coordinated movement and functional efficiency rather than maximising strength or range of motion. Repetitive resistance exercises, sustained postures, and aggressive stretching may be poorly tolerated. Treatment should therefore be individualised, symptom-guided, and coordinated with relevant dental, medical, and Allied Health professionals.
Cognitive-communication in EDS
Cognitive-communication difficulties are increasingly recognised in people with EDS (particularly hypermobile EDS and Hypermobility Spectrum Disorders (HSD). Many individuals describe experiencing “brain fog”, which may affect attention, concentration, memory, processing speed, word retrieval, and the ability to organise and communicate information effectively.
These difficulties are often multifactorial, reflecting interactions between autonomic dysfunction (including POTS), chronic pain, fatigue, sleep disturbances, and other associated conditions. Symptoms may fluctuate considerably depending on physical exertion, cognitive demands, orthostatic tolerance, and overall symptom burden.
Cognitive-communication challenges may include:
Attention and processing: Difficulty sustaining concentration, following complex conversations, processing information quickly, or managing competing demands.
Memory and word retrieval: Forgetting information, losing track of conversations, or experiencing difficulty finding words during spontaneous communication.
Executive functioning: Challenges with planning, organising thoughts, initiating tasks, multitasking, and managing complex information.
Cognitive fatigue: Reduced communication efficiency and endurance during prolonged conversations, meetings, work, or other cognitively demanding activities.
Importantly, these difficulties do not necessarily indicate permanent cognitive impairment. For many individuals, cognitive performance varies alongside changes in fatigue, pain, autonomic symptoms, and other physiological demands.
Speech Pathologists can assist by evaluating the functional impact of cognitive difficulties on everyday communication and participation, identifying contributing factors, and developing individualised strategies to support attention, memory, information processing, and executive functioning.
Our approach at Medical Speech Pathology
Medical Speech Pathology provides specialised, EDS-informed assessment and intervention that integrates detailed clinical and instrumental evaluation, orofacial myofunctional assessment where indicated, and fatigue-aware, sensory-informed treatment planning.
We work collaboratively with ENT specialists, Dietitians, Physiotherapists, other Allied Health professionals and EDS-aware medical teams to support safe, sustainable outcomes that prioritise participation and quality of life.
Professional leadership and collaboration
Melissa is part of an international group of Speech Pathologists contributing to research and emerging consensus guidelines for the management of swallowing and communication in EDS. She is also a member of the ENT consortium under the Ehlers-Danlos Society, supporting interdisciplinary collaboration and evidence-informed practice in this area.Â
Our team regularly participates in the EDS ECHO program, Global Learning Conferences, and ongoing professional development focused on EDS and Hypermobility Spectrum Disorders.
Further information
For more information about Ehlers-Danlos Syndrome, visit the Ehlers-Danlos Society at
https://www.ehlers-danlos.com