Rett syndrome is a neurodegenerative disorder that almost exclusively affects girls. It is characterized by acquired microcephaly, developmental regression starting around 12–18 months of age, loss of speech, and loss of normal hand function. In most cases, patients also have seizures, cannot move, and have severe problems with communication.
Mobility, communication, and home adaptations can help patients with Rett syndrome overcome their disabilities and carry out daily activities as independently as possible.
Rett syndrome patients often have communication problems. Augmentative and alternative communication (AAC) methods and aids can help. These include picture cards, communication boards, devices with voice output, computers, and various apps.
Aids for daily living
Aids for daily living include items that enable more independence with daily activities such as bathing, toileting, grooming and dressing, feeding, drinking, and cooking.
Bath safety products include shower chairs, transfer benches, raised toilets, grab bars, and safety rails.
Dressing and grooming aids such as dressing sticks, shoehorns, hair grooming aids, zipper/button aids, hip kits, and shoelaces and fasteners can help patients dress themselves more independently.
Hygiene tools and accessories are available to help patients maintain cleanliness and hygiene. Some can be used by caregivers to assist patients.
Special-needs scissors and cutting aids are available to help those who struggle with fine motor skills and/or hand mobility.
Modified cups and drinking aids that are easy to pick up and hold are available. These include plates and bowls with built-up rims and edges, and utensils with large, angled, or weighted handles that are easier to grasp. Special-needs weighted and curved utensils including spoons, forks, knives, and other utensils with grip aids can help those who have issues with fine motor skills.
Specially designed kitchen aids, including easy openers, knob and tap turners, utensil holders, meal preparation aids, and kitchen appliances, can help in activities such as preparing meals, holding utensils, opening cans and bottles, turning taps and knobs of stoves, and maintaining cleanliness.
Reachers and reaching aids are available to help easily grab hard-to-reach items.
Braces and other orthotics may be necessary to support weak joints or limbs.
There are several types of braces:
- ankle-foot orthoses to overcome hypertonia
- craniocap orthoses for flat-head syndrome
- back braces to support the spine
- special scoliosis braces
- specially designed footwear and inserts
- hand splints to help position the thumb for grasping, prevent stereotyped hand movements, and reduce self-injury and agitation where they are particularly severe
Mobility and seating aids
Seating and mobility equipment include manual or power wheelchairs with custom seating, strollers for younger patients, walkers, standers, lifts, and feeding chairs. Specialized wheelchairs, scooters, and carts may be needed to move freely, both indoors and outdoors.
Sitting and standing aids such as turning devices, curved grab bars, security poles, and canes can help users sit and stand from a bed, couch, or chair.
Mobility car aids such as swiveling car seats and grab bars are available for those who find it difficult to get in and out of the car.
Other aids and adaptations
Pointers and page turners help individuals to turn pages, use a keyboard, or hold a pencil.
Therapy aids such as balls, bands, putty, weights, exercise mats, and balance boards, are available to assist therapists, educators, and parents in helping patients build strength, stimulate new skills, and promote independence.
Reading and writing aids such as book holders, page turners, head pointers, mouth sticks, and other writing aids are available to make reading and writing easier and more effective.
Home modifications may be required for indoor and outdoor furniture, lifts, lighting, signs, and different rooms at home so that they are more easily and safely accessible for the patient.
- Ramps can be built for entry and exit at home so that it is wheelchair-accessible.
- Bathrooms can be made wheelchair accessible, for example, by not having cabinets underneath the sink.
- Bedrooms should have enough space for a medical bed and other equipment, including a wheelchair. A mechanized sling can help the patient move from the bed to the wheelchair and vice versa.
- Kitchens can be fitted with drawers that can be opened without difficulty so the patient can access food and other items more easily.
Rett Syndrome News Today 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 another 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.