Tips for Healthy Living with Usher Syndrome
Practical Hints for Everyday Life
This section was the inspiration of Sarah Turner who compiled a list of practical tips to make life a little easier and safer for those living with Usher syndrome. Others have shared their clever ideas too. Do you have a tip you'd like to share? Please send it to firstname.lastname@example.org
Ditch the Clutter!
Because of their decreased fields of vision, children with Usher syndrome often have trouble seeing things directly next to them or below them. Keeping things tidy will help your child more safely navigate his or her space. Being mindful to keep clutter off the floor, and refrain from leaving drawers and cupboards open will not only allow your child to move more confidently around his or her surroundings - you get a cleaner house!
Light the Night
One of the first symptoms of retinitis pigmentosa is night blindness, where your child will have difficulty seeing in dark or low-light environments. Invest in a sturdy and easily portable flashlight your child can have handy at all times if needed. Some children prefer to have a light on in their rooms at all times, even during the night. Experiment with different types of lamps to find the one that makes them feel comfortable. A timer can assure that a light is on in their room to welcome them home.
Install nightlights throughout your home, particularly in hallways and rooms without access to natural light.
Attach rope lights safely along the hallway floor from your child's bedroom to the bathroom. They can be left on 24/7. This is similar to the lights at movie theaters in the aisles. These can also be put along other common routes inside and outside the home. They can be connected to a timer of a light switch. These can be helpful in lighting the path to take out trash, get the mail, etc. You can use different colors for different routes.
When lighting is not available, offer your arm to your child to guide them through dim environments such as restaurants and auditoriums, or while outside at night.
Protect What you Have
Each child's vision and hearing varies, and there are many strategies and tools that can help. For example, for children with hearing loss, hearing aids or cochlear implants may be beneficial to amplify sound.
Put on your shades. Start young - wear sunglasses, and encourage your child to wear his or hers too! Research from the University of Oregon shows the importance of protecting eyes with RP from the sun.
As peripheral vision decreases, you may suggest that your child wear a favorite baseball cap. The bill of the cap will give some protection from unseen items from above.
Around the House
Use your Smartphone in Camera mode - If you have difficulty moving through a dark room or along a path in very dim light - like at dusk under trees - put your smartphone in camera mode and hold it in front of you. The phone displays a continuously updating image automatically adjusted for low light levels, hence is brighter and has more contrast, allowing you to see the path ahead of you.
Make chores a little brighter - a headlamp (sold for night running) is very bright and can be worn when you work around the house, take out trash in the dark, etc.
Magnify and contrast - a portable, handheld electronic magnifier reverses contrast (white on black) and magnifies print and images so that you can read labels, mail, and other print documents more easily.
Apps Can Smooth the Conversation - Conversing with another person in a dark and/or noisy restaurant can be challenging. Using a real-time Ai transcription app on your phone or iPad like otter.ai can help. Simply open the app, place it on the table between yourself and the person you're speaking to, and carry on. If you miss something in conversation, you can refer to the app.
Change your Background - When you have very few photoreceptors left on your retinas, white backgrounds tend to overwhelm those photoreceptors, making it difficult to read your screen. Some people with RP find that reverse high contrast mode is the only way they can actually read screens. You can change settings on all of your devices - computers, smartphones, tablets - to white letters on black background. In Windows, go to: Settings-> personalization. On an iPhone , go to Settings -> Display & Brightness (change to Dark mode).