People with Ehlers-Danlos syndrome (EDS) are known to have joint hypermobility, an increased propensity for joint dislocations, muscle weakness and fatigue, poor coordination, gait defects, and postural problems. These symptoms can affect their ability to carry out daily life activities.

Some EDS patients may require aids and adaptations to maintain their independence.

A physiotherapist or an occupational therapist can assess an EDS patient’s needs, give recommendations, and teach the person about available aids and adaptations.

Orthotic devices

Orthotic devices address issues of muscle weakness and contractures, joint problems, scoliosis, among other issues.

Orthotics such as splints and braces can help protect joints and knees, and facilitate walking.

Taping the joints of fingers may protect them from dislocations.

Custom-made ankle-foot orthotics can stabilize the ankle, foot, and leg below the knee. Knee-ankle-foot orthotics also cover the knee (in addition to the ankle, foot, and leg), helping to stabilize their joints.

Children with EDS who have flexible flat feet or trouble with bearing their weight may require special orthotics for support, and footwear that is comfortable and supportive. Especially important here is providing cushioning for the heel and sole.

Mobility devices

Some patients with EDS may require specialized mobility devices, such as a wheelchair or a scooter, and a walker, crutches or a cane for mobility. However, care should be taken so that joints and other areas of the body affected by the disease are not injured by shifting weight when, say, walking with a cane or crutch.

Gait trainers and posture control walkers can help a person walk more safely, as well as improve postural alignment in patients with gait and postural control problems.

Eating and writing utensils

Modified eating and writing utensils, like those with varied grips and weights, are available. These can help reduce strain on the small joints of the fingers and hands.

Home adaptations

Grab rails and handrails in the bathroom, toilet, stairs, and along walls can provide support and reduce the risk of injuries due to falls.

Doorknob adapters can help patients to open doors more easily.

A modified sleeping surface, such as an air mattress, viscoelastic foam mattress, or a pillow mattress, may help to reduce pain and allow for a better night’s sleep.

Adaptations at school or workplace

EDS patients can benefit from a chair with arms to support their upper body, or a chair and desk that can be adjusted for height. Padding for the chair seat and back can also help.

Bean bags can be an option at school, for use in group activities where children are expected to sit on the floor.

If a person’s wrists and fingers are severely impaired, a voice to type program such as Dragon Dictate can be helpful.

 

Last updated: Oct. 17, 2019

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.