Assistive Device Use in hEDS
Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder marked by joint hypermobility, chronic pain, proprioceptive dysfunction, fatigue, and frequent subluxations or dislocations. Managing these symptoms often requires a multidisciplinary approach in which assistive devices play a significant role. Braces, orthotics, mobility aids, compression garments, ergonomic tools, sleep supports, and adaptive technologies can improve safety, reduce symptoms, and enable greater participation in daily life.
These tools are most effective when chosen carefully, fitted appropriately, and used as part of a broader plan that includes physical therapy, pacing, and strengthening. They do not correct the underlying tissue fragility but can stabilize joints, improve function, and conserve energy. Because each person’s needs vary depending on the joint involved, severity of instability, activity level, and comorbidities, professional guidance and selective use are essential.
Purposes of Assistive Devices
Assistive devices are used to
Improve joint stability
Reduce pain and fatigue
Prevent injury or overuse
Increase independence
Support activities of daily living (ADLs)
General Principles
Supports can stabilize joints and improve function, but exercise and therapy remain central to management.
Devices are most effective when used selectively—during activity, after injury, or for specific tasks—rather than continuously.
Poorly fitted supports can cause pain, skin breakdown, or compensation injuries elsewhere.
Fragile skin in hEDS requires daily checks for redness, sores, or bruising under braces or compression garments.
External supports should be reduced as muscle strength and stability improve, to avoid long-term dependency.
Experimenting with different devices or brands may be necessary to find the right balance of support and comfort.
Custom devices are often expensive, and insurance coverage varies. Documented medical necessity from specialists can improve approval.
Physical therapists, occupational therapists, orthopedists, podiatrists, and orthotists can help match devices to individual needs.
Braces and Splints
When to Use
After a subluxation, dislocation, or injury to rest and protect a joint
During tasks or activities that increase instability risk such as exercise, lifting, or prolonged walking
For joints that feel unstable or painful in daily life and interfere with function
Why They Help
Limit excessive range of motion
Provide external stabilization to reduce pain and fatigue
Offer proprioceptive input that enhances body awareness
Increase confidence during movement and decrease fear of dislocation
How to Choose
Rigid braces (e.g., hinged knee braces, rigid ankle stabilizers, wrist cock-up splints) provide strong stabilization for severe instability or acute recovery but may promote muscle atrophy if worn continuously.
Soft braces (e.g., neoprene sleeves, elastic wrist supports, shoulder wraps) provide lighter support and proprioceptive feedback. Suited for mild instability or activity support.
Ring splints, often silver or thermoplastic, stabilize hyperextending finger joints. They are usually custom-made and prevent painful hyperextension without completely blocking motion.
Off-the-shelf braces are widely available and less expensive but may not fit atypical anatomy. Custom devices may be needed for severe or unusual presentations.
Padded or fabric-lined braces reduce the risk of skin injury, which is common in hEDS.
Cervical collars may be used under medical oversight for craniocervical instability.
Orthotics and Supportive Shoes
When to Use
In cases of flat feet, high arches, or frequent ankle rolling
When foot pain or poor alignment contributes to problems in the knees, hips, or spine
For individuals who cannot walk or stand comfortably without additional support
Why They Help
Improve alignment and gait mechanics
Distribute body weight more evenly across the foot
Reduce pain and fatigue during walking or standing
Enhance balance and decrease risk of falls
How to Choose
Custom orthotics are made from molds of the foot and adjusted for deformities or specific pain points. They have the strongest evidence in hEDS.
Prefabricated insoles are readily available and lower in cost. They may provide adequate support in mild cases, though effectiveness is often limited.
Rigid orthoses correct structural deformities such as pes planus more effectively but may be less comfortable.
Soft or semi-rigid orthoses provide cushioning and shock absorption with moderate support. Better tolerated long term.
Supportive shoes with firm soles, secure lacing or straps, and stable heels enhance orthotic function. Flexible, unsupportive shoes reduce effectiveness.
Custom shoes may be required for significant deformities or instability not addressed with insoles.
Mobility Aids
When to Use
When pain, instability, or fatigue makes walking unsafe or severely limits activity
During recovery periods or flares
For long-distance mobility when joint instability or comorbid dysautonomia restricts endurance
Why They Help
Reduce fall risk by adding external stability
Offload pressure from unstable or painful joints
Conserve energy, allowing participation in work, school, or social activities
Provide safety and independence
How to Choose
Canes shift weight away from one leg. Adjustable height is essential to avoid strain.
Forearm crutches provide more stability and better weight distribution than underarm crutches. Useful for bilateral lower limb involvement or balance issues.
Standard crutches offload more than canes but require significant upper body strength and may not be tolerated long term.
Walkers and rollators offer bilateral support and stability. Rollators include seats for rest, useful in fatigue and POTS.
Manual wheelchairs are often used intermittently during flares or for long distances. Long-term use requires attention to shoulder strain and posture.
Power scooters and power wheelchairs may be appropriate for severe fatigue, frequent falls, or orthostatic intolerance that prevents safe ambulation. Insurance often requires documentation of medical necessity.
A physical therapist can ensure correct height, posture, and safe use. Improperly adjusted aids can worsen pain or cause secondary injuries.
Compression Garments
When to Use
For individuals with poor proprioception and frequent clumsiness or falls
When light compression relieves joint pain
In those with POTS or other dysautonomia to reduce dizziness from blood pooling
Why They Help
Provide gentle, constant feedback to muscles and joints, improving body awareness
Improve balance and postural control
Enhance venous return and reduce orthostatic symptoms
Reduce fatigue and clumsiness
How to Choose
Garments include compression leggings, sleeves for knees or elbows, gloves for fingers or wrists, or full-body suits.
Light compression is often adequate for proprioceptive feedback.
Medical-grade compression (20–30 mmHg or higher) is used for circulatory support in POTS.
Fit should be snug but not restrictive. Garments that cause numbness or impede breathing are inappropriate.
Ease of use matters: devices must be manageable for individuals with limited dexterity or pain.
Ergonomic and Adaptive Tools
Wide-barreled pens or pencil grips help stabilize hypermobile fingers and reduce joint strain during writing.
Keyboard supports or split keyboards reduce wrist extension and shoulder tension during typing. Often paired with wrist splints or voice software.
Adjustable chairs and desks promote posture and reduce fatigue. Sit–stand desks allow alternating positions.
Driving and seating aids such as lumbar supports, cushions, and adaptive controls reduce fatigue and improve safety during prolonged sitting or driving.
Voice Dictation Software
Smartphone and tablet apps provide mobile speech-to-text dictation, useful for school or work notes.
Hands-free desktop programs allow more advanced control over text input and commands. These require training and clear speech but reduce strain on the hands, wrists, and shoulders.
Sleep Supports
Contoured cervical pillows stabilize the cervical spine and reduce neck strain.
Side-sleeper or body pillows support spine, hip, and shoulder alignment.
Wedge pillows help with reflux or breathing difficulties, especially in GERD or dysautonomia.
Knee or leg pillows prevent sacroiliac strain or hip subluxation.
Common Assistive Devices in hEDS
Device Category | Common Uses | Frequency of Use | Reported Helpfulness |
Braces and Splints | Joint stabilization (fingers, wrists, knees, ankles, back, cervical spine); reduce pain and fatigue; proprioceptive input; confidence during movement | Very Common | High |
Orthotics & Supportive Shoes | Improve foot alignment, gait mechanics, balance; reduce pain and fatigue; prevent ankle rolling and falls | Common | High |
Mobility Aids | Reduce fatigue, offload painful joints, improve safety and independence (canes, crutches, walkers, wheelchairs, scooters) | Moderately Common | Moderate to High |
Compression Garments | Enhance proprioception, improve balance, reduce dizziness in POTS, relieve joint pain, improve venous return | Moderately Common | Moderate |
Ergonomic & Adaptive Tools | Reduce strain in daily tasks (pens, keyboards, posture chairs, adjustable desks, driving and seating aids) | Common | Moderate to High |
Voice Dictation Software | Reduce strain on hands, wrists, and shoulders during typing or writing; improve function for upper limb involvement | Moderately Common | Moderate |
Sleep Supports | Improve spinal alignment and comfort during sleep (cervical pillows, body pillows, wedges, knee pillows) | Common | Moderate |
Psychological Impacts
Social stigma: Visible devices can provoke judgment, shame, or avoidance, particularly in public or school settings.
Restricted participation: Device use may reinforce a sense of disability and increase anxiety.
Children and adolescents may experience peer difficulties and reduced self-esteem.
Adults may struggle with altered identity and independence.
Coping strategies: Acceptance, education, and social support improve mental health.
Support networks: Encouragement from family, peers, and clinicians improves adaptation. Limited access to psychological services and occupational therapy worsens distress.
Risks and Considerations
Braces and splints may cause stiffness or muscle weakening if overused.
Mobility aids may lead to upper body strain or altered gait if improperly fitted.
Compression garments may cause discomfort or skin irritation.
Devices can reinforce unhealthy movement patterns if used as substitutes rather than supports.
Device abandonment is common when devices feel stigmatizing, inconvenient, or ineffective.
Access, Insurance, and Financial Considerations
Prescription-required devices include custom orthotics, high-grade compression garments, and power wheelchairs.
Over-the-counter devices include canes, basic braces, ergonomic tools, voice software, and sleep supports.
Insurance coverage is inconsistent; documentation of functional impairment improves approval.
Out-of-pocket costs are frequent; HSAs or FSAs may be used.
Charitable programs may help cover costs.
Rental and trial programs may be available for high-cost equipment.
Purchasing Used Equipment
Many devices (e.g., wheelchairs, walkers, braces) can be purchased secondhand at reduced cost.
Risks include poor fit, wear and tear, hygiene issues, or lack of warranty.
Safer options include certified refurbishers, nonprofit lending closets, and hospital equipment programs.
Prevalence and Use Across the Lifespan
More than half of adults with hEDS report using at least one assistive device regularly—braces and orthotics being most common.
Children and teens often use orthotics and school-based adaptations.
Young adults frequently transition to mobility aids, ergonomic supports, or voice software.
Device use increases with age, symptom severity, and disease duration.
When and How to Use Assistive Devices
During acute pain flares or injury recovery
To prevent fatigue or joint overuse
In combination with physical or occupational therapy
With professional assessment and periodic review
Summary
Assistive devices—including braces, orthotics, mobility aids, compression garments, ergonomic tools, voice software, sleep supports, and adaptive seating—are crucial tools for managing the multifaceted symptoms of hEDS. They stabilize joints, reduce pain and fatigue, improve proprioception, and enable participation in daily activities.
These devices are most effective when selected thoughtfully, fitted properly, and used as part of a broader care plan that emphasizes exercise, therapy, and pacing. While they can greatly improve independence, confidence, and quality of life, risks such as skin injury, muscle deconditioning, or psychological dependence must be monitored. Access and cost barriers, stigma, and limited professional support often complicate device use.
With careful integration, re-evaluation, and support, assistive devices provide a foundation for safer movement, reduced symptoms, and improved quality of life for people with hEDS across the lifespan.
