Home life
Hunter syndrome affects many different parts of life, and as a result you will need to make significant adjustments to your routine and your environment. This section outlines the potential impact on everyday life, and some tips on how to manage these at home.
As described in the Signs and symptoms of Hunter syndrome page, Hunter syndrome may be classified as non-neuronopathic (the disease affects the body but not the nerves and brain) or neuronopathic (the disease affects the body and the nerves and brain). The different sets of symptoms will require different changes to be made to your lifestyle and home environment.
Non-Neuronopathic
Neuronopathic
House
Apartment
Symptoms such as problems with mobility and fine motor skills are likely to require adjustments to the home environment so that your child can move around the house more easily, play safely and manage more tasks by themselves.
As the disease develops, children will become progressively more dependent, requiring carers to provide for all their needs.
Click on the house for tips and advice for adaptations to home life.
STAIRS
Various walking aids and orthopaedic devices are available and can help with moving around. If your child has trouble climbing stairs, you could consider having their bedroom and bathroom on the ground floor, or installing grab rails around the house.
Over time your child may develop progressive mobility issues and as a result you may have to consider an elevator in the future.
GARDEN
Keeping active – while being sure to be gentle – is a great way of exercising muscles and joints, as well as using up energy. Consult your doctor to see what level of activity is appropriate for your child, taking into consideration their overall health condition and ability.
KITCHEN
Fine motor skills (e.g. precise hand movement) can be affected by Hunter syndrome. Easy-grip forks can help your child feed himself.
Swallowing and chewing food may be difficult; cutting up food into very small pieces, or mashing food, may help at mealtimes.
It is recommended to have a balanced diet, and some families report that reducing certain types of foods can help some symptoms. Always consult your doctor or dietician before making dietary changes.
WARDROBE
Fine motor skills (e.g. precise hand movement) can be affected by Hunter syndrome. Slip-on or Velcro-fastening shoes may be easier to put on than other types of shoe.
Zipper pullers and button grippers may also aid dressing. Sewing on buttons with elastic thread makes them easier to use, and elasticated waistbands are easier to manage.
Wearing a plastic-backed bib under the clothes can help prevent soreness as a result of dribbling.
BEDROOM
Hunter syndrome can make it hard to see in the dark (‘night blindness’) and some children therefore feel concerned at night time. Some families have found that having a nightlight in the bedroom helps with this.
Children with neuronopathic Hunter syndrome often have challenging behaviour such as tantrums, obstinacy and hyperactivity. This means they need close supervision at all times, and a specially safeguarded environment to prevent injuries and accidents.
As the disease develops, children will become progressively more dependent, requiring carers to provide for all their needs.
Click on the house for tips and advice for adaptations to home life.
LOUNGE
Children with Hunter syndrome often chew things, so it is advisable to cover edges of furniture or other surfaces with plastic edging strip.
You could mount your television screen high on the wall to keep it out of reach. Electrical sockets and light switches could also be situated out of reach, and protectors used where possible. Radiators can be covered with boxes to prevent burns.
WINDOWS AND DOORS
Install safety locks for doors and windows, and consider using safety laminated glass in case of breakages. You could consider barn-style doors, and child safety gates, especially by stairs.
GARDEN
Gentle exercise is advised but make sure that outside spaces are enclosed with high, safe fencing, and make sure that any gates have locks.
Avoid hard surfaces and sharp objects; grass or soft play are advised.
BEDROOM
Make the play space a safe area with soft furnishings, and by removing potential hazards such as ornaments. Mattresses or padding on hard floors can protect against falls. You may wish to consider easy-clean flooring.
Symptoms such as problems with mobility and fine motor skills are likely to require adjustments to the home environment so that your child can move around the house more easily, play safely and manage more tasks by themselves.
As the disease develops, children will become progressively more dependent, requiring carers to provide for all their needs.
Click on the apartment below for tips and advice for adaptations to home life.
ELEVATOR
Hunter syndrome children often have mobility issues, so you should ensure your apartment building has a functioning lift that is suitable for your child’s needs. For example if your child uses a wheelchair, check that the lift doors are wide enough.
Over time your child may develop progressve mobility issues and as a result you may have to consider an elevator in the future.
KITCHEN
Fine motor skills (e.g. precise hand movement) can be affected by Hunter syndrome. Easy-grip forks can help your child feed himself.
Swallowing and chewing food may be difficult; cutting up food into very small pieces, or mashing food, may help at mealtimes.
It is recommended to have a balanced diet, and some families report that reducing certain types of foods can help some symptoms. Always consult your doctor or dietician before making dietary changes.
WARDROBE
Fine motor skills (e.g. precise hand movement) can be affected by Hunter syndrome. Slip-on or Velcro-fastening shoes may be easier to put on than other types of shoe.
Zipper pullers and button grippers may also aid dressing. Sewing on buttons with elastic thread makes them easier to use, and elasticated waistbands are easier to manage.
Wearing a plastic-backed bib under the clothes can help prevent soreness as a result of dribbling.
BEDROOM
Hunter syndrome can make it hard to see in the dark (‘night blindness’) and some children therefore feel concerned at night time. Some families have found that having a nightlight in the bedroom helps with this
Children with neuronopathic Hunter syndrome often have challenging behaviour such as tantrums, obstinacy and hyperactivity. This means they need close supervision at all times, and a specially safeguarded environment to prevent injuries and accidents.
As the disease develops, children will become progressively more dependent, requiring carers to provide for all their needs.
Click on the apartment below for tips and advice for adaptations to home life.
WINDOWS AND DOORS
Install safety locks for doors and windows, and consider using safety laminated glass in case of breakages. You could consider barn-style doors, and child safety gates, especially by stairs.
LOUNGE
Children with Hunter syndrome often chew things, so it is advisable to cover edges of furniture or other surfaces with plastic edging strip.
You could mount your television screen high on the wall to keep it out of reach. Electrical sockets and light switches could also be situated out of reach, and protectors used where possible. Radiators can be covered with boxes to prevent burns.
BEDROOM
Make the play space a safe area with soft furnishings, and by removing potential hazards such as ornaments. Mattresses or padding on hard floors can protect against falls. You may wish to consider easy-clean flooring.
