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HOME LIFE

As well as affecting many different areas of the body, a Hunter syndrome diagnosis can similarly have an impact on multiple areas of everyday life; this includes having various impacts on day-to-day home life and the daily routines involved.

It can take some time to adjust to living with Hunter syndrome and you might have to try out some different practical measures to find what works best for you and your family. This includes, but is not limited to, modifications to your home and investing in specialized equipment to soothe various symptoms.

EXPLORE THE HOUSE BELOW TO FIND SPECIFIC TIPS RELATED TO VARIOUS AREAS OF THE HOME.

Bathroom scene highlighted within home.
Child’s bedroom scene highlighted within home.
Staircase highlighted within home.
Living room or playroom scene highlighted within home.
Home office scene highlighted within home.
Kitchen scene highlighted within home.

BATHROOM

  • Add non-slip rubber mats on the bottom of tubs and showers, and on the bathroom floor, to avoid slips
  • A sturdy stool with steps or a ramp can help children to reach the sink and wash up safely

BEDROOM

  • Try placing a mattress on the floor to cushion potential falls if your child is a restless sleeper
  • Use of a white noise machine or playing soothing music at bedtime can also help restless children to drift off to sleep

STAIRS

  • Carpeting the stairs can help to soften falls
  • Add handrails at your or your child’s height to help with independent movement around the house
  • Consider installing a stair lift for older children and adult patients to move safely around the house

LIVING ROOM OR PLAYROOM

  • Padding around any sharp edges of furniture is recommended to help make playtime safer
  • Large, soft toys will provide a safer option for playtime
  • Also ensure toys have no small parts; puzzles and games should only be made up of large tiles or pieces

HOME OFFICE OR DESK SPACE

  • A desk that is height-adjustable can be modified to a height that suits your stature and posture, making for more comfortable working or studying conditions. It also allows you to alternate between standing and sitting throughout the day, preventing muscle and joint inactivity.
  • An ergonomic chair, keyboard, and mouse can help alleviate some of the difficulties caused by joint immobility
  • An under-desk foot stool can improve circulation and posture, reducing strain on the back
  • If you are able, stretching throughout the day is highly beneficial for mobility. Set yourself hourly reminders to stretch, particularly if you sit at your desk for the majority of the day.
  • If you are employed as a home worker, be sure to speak to your employer about how they can provide accommodations for your home working space
  • For more tips on navigating employment with Hunter syndrome, visit our page on Work Life

KITCHEN

  • As swallowing can be difficult, try to cut up food into small, bite-sized pieces. Also be sure to feed children at a slower rate, to ensure adequate time to swallow each bite.
  • Dietary modifications can be made to help alleviate certain symptoms—but be sure to speak to your doctor before making any changes
  • As fine-motor skills can be affected, specialized utensils may be useful to help children improve their grip and encourage independence during mealtimes
  • Stools may be useful for shorter children, especially when doing activities in the kitchen together