Dental and Oral Health in hEDS
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Dental and oral health complications are common in individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and can significantly impact quality of life. These issues are closely tied to the underlying connective tissue fragility caused by abnormal collagen, and they manifest in both the soft tissues (e.g., gums and mucosa) and hard structures (e.g., teeth, jaw joints, and bone). A multidisciplinary and preventive approach is essential for effective management.
Key Features
People with hEDS may experience
Fragile, bleeding gums
Crowded or misaligned teeth
High-arched, narrow palate
TMJ (temporomandibular joint) dysfunction (jaw joint pain and instability)
Poor healing after dental work
Frequent dental complications, including bruxism (teeth grinding), dry mouth (xerostomia), and local anesthetic resistance
Causes and Mechanisms
Empirically Observed Causes
Abnormal collagen synthesis leading to weak periodontal (gum and supporting tissue) and mucosal structures
Craniofacial growth abnormalities contributing to high palate and crowded teeth
TMJ joint hypermobility causing frequent subluxation (partial dislocation) or dislocation
Delayed or impaired healing following dental procedures
Increased mucosal and periodontal fragility, resulting in easy tearing or bruising
Xerostomia (dry mouth), possibly linked to autonomic dysfunction or medications
Poor response to local anesthetics during dental work
Increased debris index (plaque buildup) and larger distance between the cementoenamel junction (where the tooth crown meets the root) and marginal bone, indicating higher risk of periodontal disease
Theoretical Mechanisms
Altered proprioception affecting bite, chewing patterns, and jaw alignment
Myofascial dysfunction (muscle and connective tissue problems) contributing to oral and jaw pain
Increased susceptibility to oral trauma due to tissue laxity (looseness)
Pathological wound healing pathways specific to connective tissue disorders
Central sensitization (amplified pain response by the nervous system) possibly contributing to persistent or exaggerated pain responses
Microvascular fragility (fragile small blood vessels) impacting gum perfusion and tissue resilience
Observed Symptoms and Dental Findings
Soft Tissue Issues
Fragile gingiva (gums) prone to tearing, bleeding, and inflammation
Gingival recession (gum tissue pulling away from the teeth) and mucosal irritation even with gentle brushing
Larger-than-normal distance between the cementoenamel junction and marginal bone, increasing periodontal disease risk
Mucosal tears and gingival lacerations during routine dental care
Tooth and Jaw Development
High-arched, narrow palate, often with crossbite or speech issues
Dental crowding due to altered jaw structure
Greater risk of tooth root resorption (breakdown of the tooth root) and orthodontic relapse (teeth shifting back after treatment)
TMJ Dysfunction
Pain in the jaw (myalgia [muscle pain] and arthralgia [joint pain])
Clicking, popping, or locking of the joint
Frequent disc displacements or recurrent dislocations
Restricted mouth opening and facial fatigue
Other Frequently Reported Symptoms
Xerostomia (dry mouth), possibly related to autonomic dysfunction (nervous system imbalance) or medication side effects
Poor efficacy of local anesthetics (numbing agents), requiring alternative strategies during dental work
Complications with extractions or implants, including prolonged healing or post-procedure pain
Successful long-term implant outcomes possible, though often complicated by fragile tissues and delayed healing
Prevalence and Severity of Oral Complications
Compared to the general population, people with hEDS experience significantly more oral health issues. In clinical studies
Temporomandibular disorder (TMD, a condition affecting jaw joint and muscle function) symptoms and TMJ dislocations are very common in hEDS, though prevalence varies widely by study. Prevalence in various studies ranges from approximately 46.3% to over 80%, indicating that many individuals with hEDS experience jaw-related issues.
38.5% reported xerostomia (dry mouth) compared to 15.4% of controls.
46.2% reported local anesthetic resistance compared to 0% of controls.
38.5% experienced complications during tooth extractions versus 7.7% of controls.
Oral hygiene was worse, with more plaque buildup and more damage to the gums and supporting structures that hold the teeth in place.
Age-Related Considerations
Children: Early signs include mucosal tears, gingival bleeding, and frequent oral ulcers. These may be mistaken for other causes such as poor oral hygiene, nutritional deficiencies, or even child abuse, especially when bruising and bleeding are frequent.
Adults: Chronic mucosal fragility, repeated dental interventions, and higher rates of xerostomia and periodontal disease become more prominent. Implant treatment may be considered, but should be planned with awareness of tissue fragility.
Older Adults: Age-related decline in tissue repair, comorbidities, and multiple medications increase the risk of oral frailty, bleeding, and delayed healing. Implant outcomes appear comparable to the general population, but soft tissue complications may be more common.
Periodontal Ehlers-Danlos Syndrome (pEDS)
pEDS is a rare genetic connective tissue disorder that causes severe, early-onset gum disease and a lack of attached gingiva, often leading to tooth loss in adolescence or early adulthood. While it shares some features with hypermobile Ehlers-Danlos syndrome (hEDS)—such as joint hypermobility, easy bruising, and skin fragility—it is a distinct condition with a known genetic cause (C1R or C1S mutations), and it is not considered a subtype or variant of hEDS. While it would be theoretically possible to have both hEDS and pEDS, it would be extremely rare. These are unrelated conditions in terms of typical presentation and genetic cause, and most individuals with hEDS do not have any features of pEDS.
Treatment and Management
Preventive Dental Care
Meticulous oral hygiene is critical to prevent complications, with:
Soft-bristled toothbrushes
Gentle flossing or use of water flossers
Fluoride rinses and non-alcoholic mouthwashes
Schedule regular dental exams and cleanings—every 3–6 months if possible.
Educate dental providers about hEDS and request gentle techniques
Managing Periodontal Disease
Follow standard periodontal protocols, but be alert to early-onset or severe disease.
If periodontitis is aggressive and not explained by oral hygiene or lifestyle, evaluate for periodontal EDS. This distinction matters, because implants are far more likely to fail in pEDS than in hEDS.
TMJ Dysfunction Management
Conservative treatment is preferred, including:
Physical therapy focused on jaw stabilization
Occlusal splints or nightguards (custom devices to protect teeth and jaw) for bruxism
Anti-inflammatory medications and muscle relaxants (short term)
Avoid excessive jaw opening during dental work.
Surgery is high-risk due to tissue fragility and should be a last resort.
Other Considerations
For dry mouth, use sugar-free lozenges, saliva substitutes, and hydration
If local anesthetic fails, consider nerve blocks or alternative techniques
Topical anesthetics before cleanings may help reduce pain from sensitive gums and fragile mucosa
Complications with dental implants are possible due to delayed healing, tissue fragility, or xerostomia. However, case reports and small series show implant survival rates in hEDS are similar to those in the general population, with successful outcomes reported up to 12 years.
Preventive care is especially important before implant placement, since poor periodontal status is a stronger predictor of implant failure than hEDS itself.
Implants in hEDS: What Research Shows
Published case series and reports describe successful implant therapy in people with hypermobile Ehlers-Danlos syndrome (hEDS).
Implants have remained stable for as long as 12 years in follow-up studies, with minimal bone loss and high patient satisfaction.
Healing may take longer and tissues may be more fragile, but implant survival rates appear similar to those in the general population.
The main risks come from factors common to everyone—such as gum disease, smoking, or poor oral hygiene—rather than from hEDS itself.
Careful planning, gentle surgical technique, and regular dental follow-up are important to support healthy outcomes.
Practical Tips
For Patients with hEDS
Inform the dentist of the hEDS diagnosis.
Use a soft-bristled toothbrush and non-abrasive toothpaste.
Floss gently or use a water flosser to avoid gum trauma.
Consider using fluoride rinses and alcohol-free mouthwash.
Schedule dental cleanings more frequently (every 3–6 months).
Avoid opening the mouth too wide during dental care.
Consider taking an anti-inflammatory before dental procedures if approved by a physician.
Report unusual or prolonged pain, poor healing, or numbness promptly. This is particularly important after implant placement, where fragile tissues may take longer to recover.
Good daily hygiene and regular follow-up visits are key to maintaining implant health if implants are placed.
For Dental Providers
Use gentle manipulation, retraction, and instrumentation to protect fragile tissues.
Consider topical anesthetic for cleanings if patients report oral sensitivity or discomfort.
Be cautious with prolonged procedures—schedule breaks and support the jaw.
Understand that local anesthetic may be less effective—consider alternatives.
Anticipate delayed healing and monitor recovery carefully, especially after extractions or implants.
With proper planning, atraumatic surgical technique, and close follow-up, implant outcomes in hEDS can be favorable and do not appear to carry a higher long-term failure rate than the general population.
Avoid aggressive periodontal or surgical interventions when possible.
Use a team-based approach: collaborate with physicians and physical therapists if needed.
Document patient reports of TMJ instability, anesthetic resistance, or abnormal healing.
Watch for signs of periodontal EDS if there is early-onset or severe periodontitis not explained by hygiene.
Summary
Dental and oral health in hEDS is a significant but often underrecognized concern. Fragile tissues, abnormal craniofacial development, TMJ dysfunction, and healing complications can all contribute to frequent dental problems and reduced quality of life unless effectively managed. Preventive care, gentle dental techniques, and appropriate use of interventions—including careful implant planning and management—can substantially improve comfort and outcomes. Available evidence suggests that dental implants in hEDS generally have survival rates comparable to the general population, provided that preventive care, atraumatic (minimizing tissue injury) techniques, and close monitoring are prioritized. Recognizing the signs of tissue fragility and adjusting dental care accordingly are key to supporting lifelong oral health in individuals with hEDS.
