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Introduction
Ligament hyperlaxity is a common characteristic in individuals with Down syndrome, often present alongside muscle hypotonia. This excessive flexibility of the ligaments, which may seem harmless or even advantageous at first glance, actually has significant implications for joint stability and daily life.
In ESAT, a worker with unstable joints may encounter difficulties in certain tasks or be more exposed to the risk of injury. In group homes, hyperlaxity influences posture, movement, and the practice of physical activities. Understanding this particularity allows for the adaptation of the environment and support to prevent complications and promote well-being. This article proposes to explore hyperlaxity, its consequences, and adaptation strategies in establishments.
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What is ligament hyperlaxity?
The ligaments and their role
Ligaments are fibrous structures that connect bones at joints. Their role is to stabilize the joint, limit the range of motion within a physiological range, and protect against excessive movements that could damage the joint.
Ligaments with normal tension allow for sufficient mobility for daily tasks while ensuring the necessary stability. They work in synergy with muscles to keep the joint in place.
Hyperlaxity: excessive flexibility
Hyperlaxity refers to an abnormally high elasticity of the ligaments. They stretch more easily and further than normal, allowing for increased joint amplitudes. A hyperlax individual may, for example, hyperextend their elbows or knees beyond normal alignment, bend their thumb to touch their forearm, or exhibit overall great flexibility.
This flexibility, which can be impressive, has a downside: the joints are less well-maintained. The ligaments, being too elastic, no longer effectively fulfill their stabilizing function.
Hyperlaxity and Down syndrome
Hyperlaxity is particularly common in Down syndrome. It results from particularities of connective tissue, the tissue that makes up ligaments among other things. The extra chromosome 21 affects the production of certain proteins involved in the structure of this tissue.
Combined with muscle hypotonia, hyperlaxity creates a double fragility: the ligaments do not stabilize sufficiently, and the hypotonic muscles do not effectively compensate for this stabilization deficit.
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The consequences of hyperlaxity
Joint instability
The direct consequence of hyperlaxity is joint instability. Joints “play” more, move in abnormal amplitudes, and can sublux (partially dislocate) or even luxate (completely dislocate).
Some joints are particularly affected in individuals with Down syndrome. The atlanto-axial joint (between the first two cervical vertebrae) shows instability in about 15% of individuals with Down syndrome, requiring specific medical monitoring. The patella can be unstable and luxate. Shoulders, hips, and ankles can also be involved.
Pain and discomfort
Unstable joints work under unfavorable conditions. The joint surfaces do not fit together perfectly, the stresses are poorly distributed, and wear is accelerated. This can generate joint pain, even in the absence of identified trauma.
These pains are sometimes difficult to express for individuals with communication difficulties. They may manifest as avoidance of certain movements, irritability, or decreased participation in activities.
Risk of injury
Joint instability increases the risk of sprains, dislocations, and injuries during physical or professional activities. A sudden movement that would be harmless for a stable joint can cause an injury in a hyperlax person.
These risks must be taken into account in the organization of activities, without falling into overprotection that would deprive the person of enriching experiences.
Compensatory muscle fatigue
In response to ligament instability, muscles must work harder to stabilize the joints. This additional muscle work, which adds to the already increased effort related to hypotonia, contributes to faster fatigue.
A person who spends their day compensating for their unstable joints with constant muscle work ends up exhausted by the end of the day, even if the activities performed seemed light from the outside.
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Atlanto-axial instability: a special case
What is it?
Atlanto-axial instability (AAI) concerns the joint between the first cervical vertebra (atlas) and the second (axis). This joint allows for the rotational movements of the head. In some individuals with Down syndrome, the ligaments that stabilize this joint are too lax.
In the vast majority of cases, this instability remains asymptomatic and does not cause problems. But in rare cases, it can lead to compression of the spinal cord with serious neurological consequences.
Medical monitoring
A radiological screening for AAI is generally recommended for individuals with Down syndrome, particularly before engaging in certain sports or before general anesthesia. The results of this screening should be included in the individual’s medical file.
In establishments, ensure that this information is available and communicated to the relevant professionals (doctor, physiotherapist, sports educator).
Precautions in case of AAI
In cases of significant atlanto-axial instability, certain activities involving sudden neck movements or risks of head impact should be avoided or adapted: diving, rolling, contact sports, certain gymnastics positions.
These restrictions should not lead to excluding the person from all physical activity, but rather to adapting practices. An informed sports educator can propose safe alternatives.
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Adapting the environment in ESAT
The ergonomics of the workstation
An adapted workstation reduces the strain on unstable joints. The height of the work surface should allow for work without twisting or excessive extension. The seat should provide good support and allow the feet to rest flat.
The tools and materials frequently used should be within reach to avoid repeated extension or rotation movements. The loads to be handled should be adapted to the person’s capabilities.
Movements and postures
Some movements particularly stress unstable joints and should be avoided or adapted. Movements at the end of the joint range (maximum extension, maximum rotation) are riskier. Repetitive movements on an unstable joint can cause pain or injuries.
An ergonomic analysis of the workstation, ideally with an occupational therapist, can identify risky movements and propose alternatives.
Protective equipment
For certain activities, equipment can support fragile joints: knee pads, ankle braces, elbow pads. These lightweight orthoses provide additional support without hindering movement.
The choice and adjustment of this equipment should be made with a professional (doctor, physiotherapist) to ensure they are effective without creating other problems.
Breaks and task rotation
Muscle fatigue related to compensating for joint instability justifies regular breaks. A rotation of tasks, alternating types of joint stress, helps distribute effort and limit the overload on a particular joint.
This organization of work often benefits all workers, not just hyperlax individuals.
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Adapting the environment in group homes
Living spaces
Living spaces should offer opportunities for support and stabilization. Handrails in hallways, grips in the bathroom, stable furniture to lean on: these adjustments secure movement.
Floors should be non-slip and free of obstacles that could cause falls. Poorly secured rugs, cables on the floor, and clutter are risks to eliminate.
Furniture
Seating should be stable, with armrests that facilitate sitting and standing without excessively stressing the lower limb joints. An appropriate height avoids deep bends that are difficult for unstable knees.
Beds should neither be too high nor too low. An appropriate height facilitates the standing-to-lying transfer without excessive strain.
Daily living activities
Certain daily actions can be adapted to spare fragile joints. Using assistive devices to open jars instead of straining unstable wrists. Sitting down to dress rather than balancing on one foot. These adaptations preserve the joints without sacrificing autonomy.
The occupational therapist can suggest techniques and aids tailored to each person’s specific difficulties.
Leisure and physical activity
Physical activity remains important and beneficial but must be adapted. Sports with risks of impact or falls (martial arts, alpine skiing, intense team sports) require particular precautions. Gentle activities like swimming, walking, and adapted cycling are often well tolerated.
Supervision by professionals informed about hyperlaxity allows for safe and beneficial practice.
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Strengthening stability
Muscle strengthening work
Muscles can partially compensate for the deficit in ligament stabilization. Targeted muscle strengthening work on the stabilizing muscles of the affected joints improves functional stability.
This work should be supervised by a professional (physiotherapist, trained sports educator) to avoid poorly adapted exercises that could worsen instability.
Proprioception
Proprioception is the ability to perceive the position of one’s body and joints in space. A good proprioceptive sense allows for quick adjustments in posture and movements to avoid risky positions.
Proprioceptive exercises (balance work, exercises on unstable surfaces) improve this ability and contribute to injury prevention.
The CLINT application for cognitive and motor stimulation
The CLINT application from DYNSEO offers cognitive exercises that can be complemented by motor activities. Regular stimulation, in a playful and adapted framework, contributes to maintaining overall abilities, including motor coordination that participates in stability.
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Communicating about hyperlaxity
Informing the individual
To the extent of their understanding capabilities, the individual concerned should be informed about their hyperlaxity, the associated risks, and the precautions to take. This information allows them to participate in their own protection and report pain or difficulties.
Use simple words and concrete demonstrations. “Your joints are very flexible; it can hurt if you push too hard. Show me if you are in pain.”
Informing the team
All professionals who support the individual must be aware of their hyperlaxity and its implications. This information is part of the personalized project and should be accessible in the file.
Substitutes and new colleagues should be quickly informed to avoid proposing unsuitable activities.
Informing partners
External interveners (sports educator, activity leader, holiday camp staff) should also be informed. A summary sheet on the precautions to take facilitates this transmission.
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Monitoring and preventing complications
Warning signs
Some signs should alert to a possible complication of hyperlaxity: persistent joint pain, swelling of a joint, new difficulty with certain movements, limping, avoidance of a previously enjoyed activity.
For atlanto-axial instability, neurological signs (weakness of limbs, walking disorders, new incontinence, intense neck pain) require urgent medical consultation.
Regular medical follow-up
Regular orthopedic follow-up allows for the detection of complications and early intervention. This follow-up may recommend control radiographs, physiotherapy sessions, orthoses.
In establishments, ensure that these medical appointments are honored and that the recommendations are integrated into daily support.
Documentation of incidents
Any joint incident (sprain, dislocation, fall related to instability) must be documented and communicated to the doctor. The accumulation of these incidents can lead to strengthened preventive measures.
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To remember
> Ligament hyperlaxity, common in Down syndrome, leads to joint instability that increases the risks of injury and pain. Adapting the environment (ergonomics, securing spaces), activities (avoiding risky movements, adapting sports), and targeted muscle strengthening contribute to preventing complications. Atlanto-axial instability requires particular monitoring. Informing all support actors is essential.
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Conclusion
Hyperlaxity is a physical characteristic that, when well understood and managed, should not limit participation in activities and quality of life. The necessary adaptations are often simple to implement and benefit all individuals supported.
By creating a secure and adapted environment, and training teams on necessary precautions, you enable individuals with Down syndrome to thrive fully despite this physical particularity.
To deepen your understanding of motor particularities and develop appropriate support, the training “Down Syndrome in Establishments: Global Support” offered by DYNSEO provides the necessary knowledge and practical tools.
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Suggestions for internal linking
1. Hypotonia and Down syndrome: understanding to better support in establishments
2. Why daily gestures require more effort from individuals with Down syndrome
3. Fatigue and Down syndrome: recognizing the signs and adapting the pace in establishments
4. Down syndrome and Motor Skills: Supporting the Development of Your Child
5. Cognitive particularities and Down syndrome: processing time, memory, abstraction
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Recommended training:
Down Syndrome in Establishments: Global Support
Complementary training for families:
Down Syndrome and Motor Skills: Supporting the Development of Your Child
Recommended application:
CLINT, your brain coach
